Poor mumma

Hoorah... reprieve! Either the info that I had got off the Internet was out of date or I had got the drug name wrong... more likely the latter!... but I don't have to go into hospital for IV treatment if they do have to change my drugs after all, as I can take it via my vent stream the same as my Colomycin.
I found this out by having a crisis this morning, as I only had 5 days worth of Colomycin left in my medicine box and it takes 3 days to order from the hospital. So what to do? Do I order more or if they do change my drugs, wouldn't I be wasting NHS money?

I called Ruth, my head physio and all round wise one and asked her advice.

Ruth in her wisdom said in a very serious voice, 'that it was very sweet of me to try and save the cost of a box of drugs, but that was nothing compared to the cost that a transplant was going to cost the NHS.'
I guess a bit like piddling in the ocean!?
But the good news was that she had already told them that there was no way that I should be going into hospital to have IV treatment, as I was perfectly capable of taking them through the vent stream.
Love you Ruth.
There is nothing worse than spending 10 very long days in a ward full of sick people, just to be administered an IV drug four times a day. I offered to do it myself at home on one occasion as I was so bored in there. I used to go and sit in the rose garden in the sunshine reading, but I got carried away talking to people out there on one occasion and was out there for over three hours. Unknown to me, I had triggered off a major panic in the ward, because they thought I had legged it. One of the canteen staff asked me as I sauntered in there for another drink, if I could come with them to speak to someone on the phone as I was wanted. The ward sister had put me on the most wanted list and she gave me a right rollicking on the phone and I was told to get myself back to the ward pronto as they were 5mins away from alerting security... Oh bugger!
They confiscated my slippers after that!

I had to take mother to have her blood test taken today. We picked my sister up on route as she was going to push her around the hospital in my wheelchair as I can't manage mother and myself there on my own.
To me it was just a routine blood test, but to mother it was the worse thing that had ever happened to her and she sat quietly crying in the waiting room, bless her. I suppose looking back, I've only ever known her to have blood tests twice in the last twenty years. I guess I have got so blase about hospitals and having acupuncture for many years, that I've forgotten that for most people, blood tests are completely out of their comfort zones.
Have I become a patient and not a person?

Still mother was rewarded with a lovely lunch in the very smart restaurant in St Mikes and followed by half a shandy in the beer garden at our local pub.
I think she has got to do this all over again next week poor soul, hopefully it will be less stressful for her.

Lots of love Debbie x

I am sorry

The promised thunderstorms didn't arrive last night, but I did actually sleep better than I thought I would. Might have been down to the evening shopping trip around a large supermarket where they had their air con on full blast.
I thought the security guard was getting a bit twitchy as I walked up and down each aisle with just a pint of milk in my trolley, so I ended up buying lots of lovely bits, but reading every label very slowly indeed especially around the freezer section!

Today I helped Reni at our local church in selling books again for the 'Stepping Stones' charity and it was quite pleasant sitting outside under a tree and it was lovely to chat to people while getting involved more in the village community. I used to drive my ex mad with all my WI, school PTA and community association meetings, always dashing here, there and everywhere.
I think Reni has the same values of community life as I had and that's lovely to see in a young woman.
When we arrived at the church, we walked in on two of the church wardens saying their prayers out loud. I felt a bit uncomfortable sitting there at first as I it was almost like we were eavesdropping on their private conversations to God, but after a while it felt quite comforting listening to them as they were praying for guidance in everyday things.
I realised then that although I talk to my guardian angels everyday, I needed to apologise to the big man himself for my flippant remarks on my situation. I often say to people when they ask how long will I have to wait for an organ transplant, 'well if it's too long, then I'll start laying traps in the roads ha ha'. But that's not funny is it? I'm talking about someones life and death. I know it is the ultimate recycling, but from now on, no more jokes about how the greatest gift that I can imagine comes to me.

I had my physio today at St Mikes's and thankfully the thunderstorms had at last come and the air was a lot cooler. There is no way that I could have handled postural drainage by pummelling in yesterdays heat, just sitting in it felt like someone was holding a wet flannel over my face and expecting me to breathe through it.
Tracy the head nurse popped in to see me while I was having it done and to ask if she could take another sample. She wanted to check that all the information is the same as on my last sample. I wasn't dreaming it, they are thinking of changing my drugs as the pseudomonas is now showing resistance to my colomycin. But unfortunately this time it could involve another ten day stay in hospital for this new treatment.
I have been taking this particular drug for five years so I guess that it's understandable that it has built up a resistance, but they have changed the make only about three months ago, so it is as good as the original? Is the government's bid to save money in the NHS meaning that they are swapping better makes with cheaper, less effective drugs?

I looked up the name of the new drug that Tracy mentioned on the Internet when I got home and if I have got the correct spelling... Amikican... then it is administered by injection or IV which would involved the hospital stay that Tracy mentioned. The word bugger springs to mind.
Is this karma for my flippant remarks I wonder?
Wait and see.
I do think that those words will be engraved on my tombstone!

Lots of love Debbie x

Please rain!

And after the high, comes the low. Only in this case it was the weather ganging up against me that made me low today. My goodness it was hot today.

The day started ok. I had to take my mother to see the nurse at lunchtime to have her dressing on her leg changed and it was about then that it all started going down hill for me with the heat.
Trying to get mother into the car and out again at the doctors, was a tad too much for me. I don't actually know how hot it was today, but what I do know it was extremely hot and humid and that combination isn't the best for me.
The sweat was dripping off me by the time I got into the doctors and even with my oxygen on... I was only registering 86% this morning... so I was a little on the labouring side while trying to walk.
I know mother wants to pretend everything is rosy in her world so no one mentions the word 'home,' but they needed to know the truth about how she is actually feeling, so we can get any treatment that can help her and keep her safe in her bungalow. But today I came across as the bossy daughter and I really didn't mean to.
Luckily the nurse was on the ball and checked mother's blood sugars, which were rather on the high side. I have to take her for a couple of blood tests at St Mike's on Wednesday and if she is diabetic, which the nurse thinks she could very well be, then that could be a factor in what's making her confused too and making her shaky.

By the time I got her home ad did a load of little chores for her, I was confused. Well not confused , but clumsy and suffering somewhat from the heat somewhat. I don't know whether it is the fact that my blood being thicker, makes it harder to cool down, but today was a nightmare.
At least I got her to chuck away her shoe from last week which was covered in her blood. She had already fished it out of the bin from when I threw it oout last week. Apparently she reckoned she was saving it to show my brother. I know what effect that would have on him and he would have hit the deck before I had counted to 5 as he hates the sight of blood, let alone a macabre souvenir of her cut leg!

When I got back to my bungalow, I had to keep indoors with all the windows and doors open to get a breeze through . This was annoying as my friend Irene had asked me around for a BBQ later on, but I actually felt tearful through the heat. Eventually I decided to go for a drive with the windows wide open so I could cool down that way.
I am hoping that the promised thunderstorms balance this humidity out a bit and I will feel more alive tomorrow, as the thought of having physio in this heat is far from a tempting offer.
Strange how only last year, I could handle 40 degrees in Cyprus with no real trouble, well as long as I was siting by a pool with an iced coffee in my hand!
I really must ask Julie if I can borrow her hoover to blow up the paddling pool that I had brought myself, because sitting in a kids pool at this very moment is a very enticing thought. If the neighbours think I've lost the plot, then so be it.

Lots of love Debbie x

A Midsummer Glamp has began

Well with the help of my friends and family, I feel like I am back in the real world. What a lovely weekend I have had.

Friday night started totally different to last Friday as thankfully I was feeling so much better thanks to the course of antibiotics and more importantly, my boost in the form of the letter from Papworth and was really on a high as I drove us girlies off to see the 'Evening of Burlesque' at the Civic Theatre in Chelmsford.
I take my hat off to the way those ladies could swing their tassels! Julie who is the least bashful of us all, was the one who didn't know where to look at first and she thought I had brought her to a strip joint! But she soon settled into the show and admired all the glamorous 50's style costumes and the glitz of it all, realising it wasn't seedy at all.

Saturday morning Reni and myself went along to the 'Village Plan' in the park and sold books there in an effort to raise money for 'Stepping Stones' a charity based in London, but raises funds and awareness against child poverty and abuse in Nigeria and on the Nigerian children slave traffic to England.
It was really good to be doing something positive for others and being back helping in the community again. Before this disease took hold, I was always rushing about here or there attending something in the village community. That is what village life to me is all about, getting involved.
We sat in the park drinking tea, chatting to fellow stall holders and buyers alike and it gave me an amazing buzz, plus we made a profit, so bonus.

Last night I set off to Julie's Midsummer Glamp and it was hysterical. I was really nervous about going to be totally honest, but no need and I should have more faith. We sat in her garden which was full of tents in all various shapes and sizes, but all covered with fairy lights. We drank what seemed gallons of Pimms and Mohjitos. We ate a giant Chinese takeaway, probably the biggest order they had that evening and then changed into our pjs as the sun went down whilst wearing some rather scary face packs!
At one point with my henna tattoos on one hand... done that morning at the 'Village Plan' thanks to another fund raiser... and a Pimms in the other, sitting in the sun listening to 'Kings of Leon' etc, you would have been forgiven for thinking that I was at the Vfestival rather than in Julie's back garden! This was far more civilised, well until Lynn threw up, bless her.
I managed not to catch the Garden Jenga and bring it crashing down after the kids had built it up with my oxygen tubing which was looped around the garden and I looked like Miss Haversham dragging it behind me! And I stayed a safe distance away from the roaring fire, that Julie had borrowed from my garden and had lit once it started getting cooler.
Everyone settled down into their tents about 1am. But this was after lots of giggling from those being gassed by Tiff's windy habits in the six man tent and a bit of screaming from the little ones when Darren shook their tent after they were telling ghost stories to each other, and while Brenda and myself settled down in our comfortable beds in Julie's house, but with the windows open so we could hear Julie's renowned snoring.
The 1st Annual Midsummer Glamp at Julie's has been established.

This morning Julie cooked a full English breakfast for all of us before we all set off on our separate ways. She really should take on a B&B as she would be brilliant at it. My way was to make the most of the sudden sunshine and take mother to Maldon for a picnic.
I sat next to the car in my deckchair with my Panama hat on, eating cheese and pickle sandwiches, reading a book, thinking life doesn't get much better than this. Of course it could and if I'm lucky enough to get this transplant, then I can push mother up and down the prom in my wheelchair for her to enjoy everything too. Until then she is content the same as me to sit and watch the world go by.

Thank you to everyone that has made this weekend so special for me. And a big thank you to Julie.

Lots of love Debbie x

Whoop Whoop!

I'm writing my blog early today, as from having nothing to say yesterday to plenty to say today. I want to announce that I am no longer a lady in waiting... My letter from Papworth has come!
Whoop Whoop! Hoorah and Yay! I have been doing a little victory dance around my front room... Ok slight exaggeration, more of a punch the air a couple of times of dance. And then I burst into floods of tears!
Yep I am a big girl's blouse as they say.

I did go out last night to my friend's niece's boss's Jamie Oliver home ware party, but as it was up a flight of narrow stairs. To say that they got the better of me was an understatement and made me feel quite lightheaded and I was so knackered when I got home, that I really just wanted to sleep rather than blog I'm afraid. Besides I was still on a real low.
I went to sleep after having a serious chat with my guardian angels about 'sorry I was behaving like a spoilt brat etc and I know I have a lot to be thankful for etc' and I know a lot of you must be thinking I have totally lost the plot, but I think you have to believe in something and this is my choice.
Anyway I was reading a recipe when the post came and there in amongst a whole load of other post was my letter. Papworth 25th July 2.30pm for a primary assessment and discussion.

24th July, I will be praying like a good 'un to my angels about stopping myself from screwing it up by saying the wrong thing at the interview... perhaps I better leave my guardian angels watching over me out of the conversation for starters!
But I have to strike a careful balance between being ill enough to having it done, so I mustn't be too vain/bloody minded and I have to admit that at times i have to concede defeat. And then on the other hand being too ill to have it done and going on a day like anyone of the past few days where I've felt so grim that I could have easily thrown in the towel. I am worth the effort Papworth honestly.

I am on such a high at the moment. Julie couldn't believe how much difference just one letter could make to some one's spirits, but even getting this far is like winning the lottery. I know I have got a long journey in front of me now and there will be a lot of tears along the way. Plus there is no guarantee that I'm going to get a transplant at the end of it all, but this one letter has filled me with so much hope.

I'm going to going to watch a 'Burlesque Night' tonight and who knows, I may even join them on the stage!

Lots of love Debbie x

Answers on a postcard please

Quite a confusing day today. I really didn't have the appetite to do very much at all today, which isn't really me. The weather was pretty nondescript again and my confidence or self belief was at an all time low.

I find writing this blog helps me enormously as for one thing I can write my thoughts, fears and feelings down and not have to keep going through them all the time and bore my friends. Though I wouldn't be so big headed to think that all my friends even have time to bother with my blog, so some friends will get bored I'm afraid. But it gives me an avenue to get it out of my system, because if you have to keep repeating yourself about you're fed up about not hearing from Papworth etc, it actually can bring your mood crashing down and i am frightened of becoming he person that people jump in shop doorways to avoid.
Secondly if it helps someone else out there who suffers with bronchiectasis or another end stage lung disease, then something good has come out of this blog and maybe one day someone may send me a message giving me some good advice... hopefully not to give up blogging!

I went to Maldon to have my physio today and luckily it wasn't as hot in there than it usually is. Nothing worse than being beaten up and dying of heat at the same time. It's a long drive home with the headache that tends to follow that sort of exercise!
But the physio today was asking about my transplant progress and told me about their lung transplant success story in Maldon. I was all ears listening to this, trying to learn anything at all that could help my quest. I asked questions about his oxygen levels and how long did he have to wait etc? His case was different to mine I know, but he was roughly the same age as me and it took about six months from getting his pager to getting his new organs and best of all, within six weeks he was up and normal again.
This had a strange reaction on me, as when driving home instead of being hopeful, I became quite sad that this man had the chance at life again that I so craved and would I be so lucky? Would two people in the same region be able have a bite at the same cherry? Or would the powers that be say no because they have to spread the love?
Also when I enquired about the microbiologist's findings, she couldn't find anything about the fact that they were considering changing my drugs, so that was yet another thing that confused me.

When I got home I went to throw out the packet of these antibiotics, but not before reading the side effects list on these tablets again and lo and behold depression was pretty high ranking among them. I try not to take these details too much to heart when I start a course, as yes most new drugs give you an upset stomach or interrupts your sleep patterns. I worry that you could easily be going 'Ooo yes I have that' and looking for spots on your bum etc, but as I finish my course tomorrow then I thought there was no harm now in just giving it a thorough once over.
So it maybe the weather, it maybe the tablets or it just might be I'm fed up of going 'yeah bring it on' and that I'm fed up of waiting and seeing, which I find myself saying all the time to people. So I give myself permission to feel peeved off and moody. I have an exciting weekend ahead, but I deserve it because I'm worth it!

Lots of love Debbie x

Snowballing

I've just been listening to my son's worries.
Having to deal with the inflated egos of various people and trying to sort snow balling problems out in a way that suited everyone. Of course he sorted it as that is what he does, but I worry that he takes on too much with the role of pacifier.

As a child he was such a worrier, but nowadays he would make a brilliant counsellor with his calm and rational thinking if he wanted to retrain. He makes you feel safe when he is around.
Sometimes when I have been moaning about this one or that one, he'll look at me and I hear him saying what I used to say to him when he was growing up many years ago before I was a bitter and twisted old lady.
'Would you want to be treated like that?'
How the tables have reversed as we grow older. My mother has become my child and I am fast becoming his.

He popped round tonight for a cup of coffee while he was waiting to pick up his lady wife from work and to check up on me.
I felt quite worn out from listening to what he has to do at times and yet he always has time for his dad and me.
'So mother what have you got up to today?' he asked and I told him of my snowballing problems that were in a different league to his.

I explained to him how I woke up yesterday to the silhouette of a spider on my bedroom curtain and thought that it was just a little one again that had been magnified by the sunlight behind it... wrong.
It was a big bugger that fell somewhere behind my medicine box after I accidentally killed it while trying to get it into my spider catcher.
I don't want to hurt them, but I can't have them in the same room as me I'm afraid.

When I went to bed late last night and went to close my curtains, there was an even bigger one on the same curtain as the belated spider, who was obviously related to it. Only this one had a bigger body which was ribbed. Probably from where it had stashed it's knives and equally scary things... gawd it was ugly.
Trying to sneak up on this beast while wearing oxygen has it's problems, mainly catching your tubes on my bedstead.
My brass and iron bed is lovely, but moving around it is like an assault course and the 15' oxygen tubing that I drag behind me isn't beneficial to stealth.

The long and the short of this fiasco was; I caught the spider, my tubing got caught on the bed post, I dropped the spider catcher, the spider made a run for it on my bed sheets, I somehow captured the escapee spider, but by now my nose and ears had been pulled very painfully by the short length of trapped tubing. I then had to yank the nose specs off before I lost the spider again and then dispose of it in the garden. My breathing by this point was pretty painful as I was panicking somewhat and had no oxygen flow going into my lungs, so I was panicking even more.
If I had my heart rate monitored then, I think I would have been in trouble.
By the time I had calmed down, some horrible nasty had flown into my bedroom and landed on the ceiling. I tried to climb on my bed and tried to catch it. Alas I couldn't and I gave up, only to wake up to find a bite on my leg!

Was it as bad as my son's snowball, I don't think so, but he gave me a huge cuddle and told me well done anyway!

Lots of love Debbie x

Dr Burden explains

What a difference a full night's sleep makes to the world, I feel almost human again!
If I hadn't slept again last night, I think I would have probably of murdered someone. But luckily for mankind when I got into bed, sleep came quite quickly this time and when I did wake up for the inevitable trips to the loo, it wasn't long before I dropped off to sleep again... bliss.

I did feel up to getting mother's food shopping as her fridge and freezer were near enough empty, but I did have to ask Reni to carry the shopping for me.
It's one thing to sit and drive the car... which is my life line... to the supermarket or to lean on a shopping trolley when walking around a supermarket, but it's totally another thing to carry the heavy bags of shopping to mine and my mother's bungalows.
Perhaps I should get back into the habit of Internet shopping, but it is nice to get out and see what is on offer too.

I haven't heard anything from the team today, so I don't know whether they have changed their minds about changing my drugs or if they are still in confabulation about what's best for me? I dare say I will get a call tomorrow as my readings on the 'docobo' were all over the place tonight and my heart rate was especially high. All I had done was got my washing in!

I know I talk about my levels a lot and my 'docobo' readings and maybe I should explain what they mean.
A 'docobo' is an amazing little machine that is plugged into your phone line and can take your oxygen levels, measure your heart rate and you can key in your blood pressure... for which I take using another bit of equipment...for the team to read and keep an eye on you. It also can be used as a defibrillator if needed and you can send messages to the team on it if you are concerned about anything. It also asks you questions about your general well being each time you use it, which is twice a day i.e. what colour phlegm are you producing today today or are your ankles swollen? Or you can do extra readings if you are worried or have pains.
Anything over 100 on your heart rate will usually trigger a phone call of how are you feeling or what were you doing at that time.
Tonight's were 115, so not good.
My oxygen levels readings give me an indication of whether I should take it easy that day, even if I am feeling alright in myself.
If you have ever watched ER with the delectable George Clooney, they would use their little stats machine on the patients finger and if the stats read 90%, all hell would break loose and they would yell 'bag them' to the nurse, which was when the nurse would dutifully attach the face mask of pure oxygen on the patient.
I'm normally 88% while wearing oxygen and I have to walk about and carry on living on those levels, which is why I am very breathless and tired all the time. Sometimes I reach the dizzy heights of 92% and once in a blue moon after being on strong medication, I have reached 94%, but as my team know all to well, that ain't often!
Hope that explains a bit of what I prattle on about most days?!

Anyway today oxygen levels are 87% this morning dropping to 86% tonight and heart rate 115 which means REST.

Lots of love Debbie x

I have the monk on

Aren't nights long when you can't sleep?
My brain was buzzing from the new tablets and my damn legs kept twitching from restless legs syndrome. I spent most the night rolling from one side of the bed to the other looking for cool spots to try and keep my legs from aching to let me go to sleep and stay asleep.
It seemed like I was awake for most the night and I hated it. It was as if I'd be asleep for ten minutes and then stay awake for another twenty while my legs went 'hello, I'm here, can you feel me?!' I counted seven of these episodes and I can remember it being pitch black to dawn light and even brighter. In fact I was pleased when it was time to actually get up.

I've decided to stop the statins until I have a word with my local doctor and see if there is another sort I can take, as my left arm aches like hell and my specialist said to stop taking them if that happened.
I would just get my legs to sleep and then my bloody arm as I rolled over on it! As my right shoulder is duff already thanks to carrying my oxygen unit about, I don't want to knacker another one too.
Another moan, also the amount of times that I have trod on my oxygen tubing over the last two days... making my sore ears even bloody sorer than they already are thanks to the new nose specs...you'd think I have dyspraxia!
Blimey O'Reilly I'm a miserable old crone when I can't sleep.

I have been a grown up again and cancelled going to Blue Waters with Jo tomorrow. I know I can't physically go as I feel like a wet lettuce, but it doesn't help knowing that you are being sensible when turning down something normal like a shopping outing. Plus it's been eight years since I've been to that shopping mall. It comes to something when you've not got the energy to sit in a poxy wheelchair and have someone push you about.
I have got the monk on today I am sorry. So I will sit and drink my ginger beer... to stop me feeling nauseous... and cry into it.
Hopefully tonight I will sleep and I will be all fun and follicks tomorrow.
Till then... Sorry.

Lots of love Debbie x

Scale of 7 today

My rest up days are always consistent, I sit a lot, I drink gallons of water, I watch TV a lot and I long for chocolate and company.
When I got up this morning after taking all my normal drugs and my new one, I felt quite nauseous and giddy so I just went straight back to bed and laid there till it passed.
This is when you miss having a partner and live on your own. When you really need a cup of tea and a slice of toast brought to you in bed to help the nausea pass, it's all down to little old you. Still I guess it gets you out off bed!

A bit of a strange day out there with sun and quickly followed by heavy showers, but I did get to see a beautiful rainbow out the back of my bungalow early evening time. It was lovely standing by my backdoor breathing in the fresh air, I now understand my mother doing it each day.
Oliver came round to see me bearing two bars of my favourite chocolate, one of which we demolished between us straight a way. He did a load of chores for me such as hoover right through the bungalow, something that I have wanted to do all week, but between feeling breatheless and getting tangled up between the leads of my concentrator and the hoover, I just didn't have the spark to give it a go.
Next was putting the wheelchair back in the boot of my car, as even sheltered under the gazebo yesterday, it still got thoroughly soaked thanks to the driving rain that we had all day yesterday. Flaming June? I don't think so.
He also checked up on nanny and then took my empties down to the bottle bank and before you tut tut, they were empty horse radish and cranberry sauce jars etc washed out from my fridge.
He found my bumbling over my words quite amusing, but told me to get my oxygen back on for a while as not only was I confused, but my lips were blue.
He is a good man my son.

Julie called round later too which was lovely and bearing freshly picked raspberries and strawberries, my favourites.
It was good to hear all what was she had been up to today. I knew she was a little sad as her son signed the agreement this afternoon to move out and into a flat to share with his girlfriend. He'll be fine and I'm sure it won't be long before they entertain Julie around there, but I can't see that he'll be cooking the meal for a little while yet my lovely!

So summary of the day is I am now getting a headache from watching too much TV, the tops of my ears hurt from the new nose specs on my concentrator, my teeth ache from the infected sinuses, but my chest isn't hurting so much and my oxygen levels are slightly better than yesterday, so I guess win some loss some.
Hopefully tomorrow will be a bit better again and soon it will be service as normal as normal is in my life.

Lots of love Debbie x

Old crocks night in

Well the day started off alright, but it went down hill rapidly to where I am now sitting typing this with my hoodie on and a shawl wrapped round me and I'm still shivering.
I was supposed to be bungalow bound anyway today as my wheelchair was being serviced and as Jean was coming over for morning coffee, I was quite happy to stay indoors especially as the weather was so foul out there. But I was beginning to feel quite rough.
As the day went on it was evident that the wheelchair fared better than me I'm afraid.

Strangely enough I'm not coughing up anything, but I do feel like I have a brick on my chest.
Sadie called me while Jean was here. She told me that the microbiologist at Broomfield Hospital has decided that I'm to start on Ciprofloxacin for the weekend, but all of my drugs could change next week as there is something else growing in my culture rather than my normal ever present pseudomonas, which is a pain in the bum at the best of times.
The reason that she could change all of my drugs, as Hannah explained later, is that she feels that maybe the pseudomonas needs a bit of a shake up and that infections are getting a little too comfortable in there.
I don't mind as long as they do not change me to Gentamicin, as they makes me feel absolutely dreadful.

It's sad really that I can't even remember how I felt before all this started, it's amazing that you adapt so quickly to being unwell and that the way you feel just becomes the norm and you get on with it.
The other day when I was driving home from the garden centre, I had smiley memories of the joy of cycling down that same country lane in the summer. In fact I used to cycle everywhere on my big old white bike with the basket on the front and some of my friends reckoned that I resembled the character from the 'Wizard of Oz!'... bless them.

I had an extra session of physio from Hannah this afternoon, a rather good one as it happened as she had taken a new hay fever tablet which had made her in her own words, hyperactive! I think she was disappointed that I only had one set of lungs with the amount of energy that she had to empty them and empty them she did. I should be pounds lighter after that lot come off my chest.
Hannah did notice that my phlegm, I'm ashamed to say, had a very weird smell so goodness only knows what is brewing inside my lungs this time and thank goodness that she has a strong constitution.
The news from the microbiologist was a bit like a double edge sword. I'm fed up that I have another exacerbation, but on the other hand I'm relieved that there is something else down there, because I'd hate the team to think that I'm a wimp and just got the female version of man flu!

But after my physio session, I fell asleep on the sofa and woke up shivering, aching from my sinuses down and oxygen levels of 81. Not great.
So tonight I had to be a grown up and wave the girls off to Lynn's and have a night on my own in front of TV which keeps breaking up because there is a monsoon outside my bungalow. Very early to bed for me I think and hopefully the new drugs will kick in and all will not be lost this weekend, because I did have plans to see friends tomorrow for lunch. Hopefully a miracle tomorrow?!

Lots of love Debbie x

All together now... After the rain the sun

Had a couple of glasses of wine tonight, as I'm starting another course of antibiotics for this latest infection which I knew I was brewing up on Tuesday.
Quite green and thick nasties are continuesaly coming up from my lungs and nose, so the team aren't going to take any chances and are going to start me tomorrow on a course.
My arms and legs are aching too, especially my left arm, but I have no idea whether that is the infection or the effects of the statins? I've lost the advice sheet from inside the packet, so I've no idea what's normal and my specialist did warn me that if my arms hurt too much to stop taking them straight away. But how much is too much and does the aching calm down eventually or what?
I'm permanently on antibiotics, but taken through a vent stream, plus other tablets and inhalers, so my poor old body must feel like it's permanently partying at naughty places with all these drugs inside me!

I was very well behaved today and stayed indoors resting for most of the day, mainly because my energy levels were pretty low due to feeling yuk and also because of the heavy rain showers. After all, if I'm not feeling too grand at the moment then there is no point putting myself in harms way. I certainly don't want another bout of what happened to me earlier this year, where I thought there was no way back from how ill I felt thanks to a simple little bug, no way.
But by the time I went to pick up Reni, the sun had come out and surprisingly it was quite hot again. The sun glasses were back on and the cardigans came off. Very much like the words in that hymn 'After the sun the rain, after the rain the sun.' I used to love that one at primary school!
And then all change again like the hymn as when I got home and got my shopping out the car, it poured down again and I was soaked through just getting from the car to my bungalow... grrrr.
So much for me taking care of myself.
Ah well, the gardens and farmers desperately need the rain, but please clouds just wait till I'm safely inside before you drop your load!

Lots of Love Debbie x

A rest day... sort of

Although I felt like someone had filled my nostrils with cement while I slept last night, I actually didn't feel as bad today.

I'm sure it's just a summer cold and hopefully if I rest up a bit more, then this feeling whacked all the time and my lows oxygen levels will settle down again.
I just got to do what Sadie has said and that is up my fluid intake and keep my chest as clear as I can.
Easy. I drink what seems a bath full of water each day and I am already through a box of tissues from coughing up nasties today, so I'm doing everything right.
Perhaps I should get Kleenex to sponsor me?
I'm sure I could come up with some sure fire slogan about what I use them for and I'd look great on the video shoot. I can see it now, my advert on teatime TV and people from all around Great Britain running to the toilet to throw up... what a winner!

As I was going to stay in today, I decided not to waste the day and to wash the patchwork quilt that my sister made me 15 years ago. It's not as unhygienic as you are thinking honestly. I have had it cleaned a couple of times after my eldest son left home for university as he loved it on his bed and after he left home to get married, it was just used on the bed for show.
I then had it packed away for many years until I moved here and decided to use it this winter.
It actually washed up lovely and I have no idea why I wasted all that money having it professionally cleaned in the past. Apart from the bird's poo in the final 30 mins of being on the line, it looked fab and smelt gorgeous!
Excellent the day wasn't wasted at all.

I did start getting bored, so I drove over to the posh food store in Mark's Tey to buy my eldest son's Father's Day present, basil infused olive oil, posh balsamic vinegar and fig chutney... Ok he's 33 years old, I've been divorced for the past 5 years and I'm still making sure Father's Day is covered!
Still I treated myself to some rather scrummy posh chocolates, for medical reasons only of course.
They had my favourites, dark chocolate truffles with chilli...Mmmm... I popped one into my mouth as I drove off and oh dear god, did they have a kick or what?! Talk about make your eyes water. I had to eat another one straight away!

My quiet day turned into a quiet night and I spent watching 'The Apprentice', where things did start getting noisy as I shouted abuse at the TV. Goodness me are some of this candidates up their or bums or what?!
I know I'm not 60 yet, but what a low opinion they have of retired people. One girl actually asked what do old people do?
Well honey and yes that is meant to be patronising, I am retired and I do have one toe in the grave, but 'honey' come with me down memory lane at look at what I've done and I'll leave you standing!

Lots of love Debbie x

Sheets 1 - Debbie Nil

Please shoot me if I ever get any more bright ideas.

Even though when I took my stats this morning and my oxygen levels were only 86 again, I still thought that it was a great idea to strip my bed and wash my sheets. Even when I heard a little voice in the back of my head shouting 'You are having a laugh, you can not do it!'
I was still determined to have a go.
Nowadays I find that 7 of 10 times, I have to have help to change my sheets and only normally will I try and do it myself when a) I have no option, but I know help will be round or b) if I am feeling lively and can do it at a slow speed.
Yes, this morning my sheets had a certain bouquet about them from some heavy duty sweats last night and yes it was lovely and sunny out there, but it would have been best to make sure that I had back up before starting.

Sheets were off, but my was head swimming, blurred vision and I had heavy breathing that would make a pervert jealous!

Why do I do this to myself? Is it so hard to admit defeat at times?
The very thought of struggling with the duvet cover, just sent me into a panic attack and I decided to call a halt to my ill-judged, doltish bravado and that I would see how I felt as the day went on or send for help.

I didn't feel an awful lot better actually. I went for my physio at St Mike's and Sadie decided to send another sample off to the hospital laboratory, as what I was coughing up would make Shrek green with envy and my oxygen levels were still low.
Whether it is hay fever, a summer cold or another infection we will have to wait and see. But there are lots of nasties going around or so I'm told.
Either way I had a serious blocked nose again, alternative hot sweats and cold spells and a stonking headache.
Hopefully just a bad day and tomorrow will be better.

The cavalry came at night in the shape of Ann, who was on her way home from Scouts and after a blatant bribe of a glass of Pimms and lemonade, she finished making my bed for me.
I had got a second wind just before she came round to mine and I had managed to get the bottom sheet and pillow cases on by sitting on the bed and just going very s.l.o.w.l.y. But she arrived just as I had thrown in the towel and was sitting on the bed contemplating who to ring in a SOS call.
So while I got my breath back, she finished it all off by putting on a fresh cover on the dreaded duvet for me.
Maybe it was the Scouts 'Bob a Job' week as she was really bouncy as she did it!

I just have my patchwork quilt made me to wash now. Do I attempt it or do I send it off to be laundered? Either way, it's supposed to be wet again for the coming week so I have time to make up my mind and get my strength back.
Cheers Ann for making the bed, are you going past any launderettes?!

Lots of love Debbie x

I am a tidal wave

I feel a bit like an in coming tidal wave on a badly cared for beach.

I think my oxygen tubing has been twisted and turned, caught under doors and around door knobs so many times over this past year, that it has now got unruly. As I walk it twists like an angry snake and it ends up gathering things in my wake.
The other night when walking from the far side of my bed to the toilet, I had gathered one stripey sock, a half empty box of tissues, one slipper and the top off my spider catcher where it catches things and knocks things over!
Just like a wave gathering all the flotsam and jettison.

I spend a lot of my day retracing my steps as my tubing is always getting stuck under doors or caught on something or other. I long for the day when I can just walk gathering things in my hands rather than dragging them accidentally behind me or doing tremble journeys, once to where I'm going and then back to free myself from whatever I'm caught on and then forward again.
I am beginning to think that my dexterity has been stolen by a distant relation of the tooth fairy who suffers with permanent bad attitude and that she has sprinkled me with blunder dust as a sick joke!
I was always scarily clumsy around my periods, but this is verging on the ridiculous now, especially as I started my menopause about four years ago.

I had another rather low key day today which is good as I need to recharge my batteries.
I am trying to eat sensibly again, as my appetite has been a bit hit and miss just lately. Yet another thing I forgot to tell my consultant... duh.
Saturday I hardly ate and yesterday I had breakfast bran cake at the supermarket while I was waiting for my ex to finish his shopping.
Then a small chicken lunch with fesh vegetables that I cooked at mother's to ensure that she ate hers and then off to the Chinese in the early evening with my sons. A thank you for being their taxi on Wednesday.
I like being a taxi for them as I still feel useful and that I am in control of my life when I'm behind the wheel of a car. Alright I'm still breathless, but it's something that I can do for me.
But hey being spoilt is always good isn't it?!

Lots of love Debbie x

Where is my whistle and streamers?

Could my days get anymore diverse?

Last night we sat watching the Festival Players Theatre Company performing 'Taming of the Shrew' and tonight Ann and myself sat in the dark wearing dark glasses watching 'Kung Fu Panda 2' in 3d at the cinema and I loved them both!
Also the weather was as different as it possibly could be too. Last night we were sitting freezing in a barn with as many clothes on as we could possibly move in and today we were sitting in the sunshine watching Braintree Carnival.
They say variety is the spice of life!

I am on a mission to find things to do through out the summer and keep my need for entertainment satisfied, but at the same time must be something that I can do without too much worry about oxygen and walking too far.
I've always been someone that needs something to look forward to and as my future seems to be very much in the hands of others at the moment, until I know what they are planning than I have to be creative with my outings.
I am lucky that I find the most simplest of things fun and that I am not a spoilt little rich girl that only a holiday in the Maldives with designer clothes etc will appease.

Today sitting in my wheelchair by the side of the road waiting in the sunshine for the strains of the first marching band to make their appearance, I couldn't have been happier.
I had my bag of loose change that I swapped with my ex to give to the children dressed up as story book characters and life felt good.
We waved back at the pretty visiting carnival queens who were wearing their fixed smiles, smiled at the little children on their colourful floats and tapped our feet to the music of the marching bands.
At the risk of upsetting and alienating myself from mothers with children in marching bands, we giggled at the mothers that maybe were taking the whole thing more serious than their daughters.
There was one mum, who had actually grabbed herself a flag and was dancing away at the front of the troop in a world of her own.
You could almost hear the daughter going 'Mum!' through gritted teeth from the back of the troop! I take it was her, as she had a face like thunder and was looking daggers at the happy mum who was fifteen again and loving it!

And as we ran out of floats and collectors before we ran out of loose change, we went off and got ourselves a milkshake at an outside cafe with our spoils.
Sitting there counting out the coppers and the silver, was almost getting something for nothing and 'Ooo' the taste... straight back to my childhood.
I might not be able to dance like that flag waving mum, but I was right with her on the milkshake front!

Lots of love Debbie x

Flaming June

Hoorah... I slept right through the night last night and it was lovely, I feel a different person.
I think ferrying my two sons to and fro to their friend's wedding venue at different times of the day and then picking them up late at night helped. It kept me busy throughout the afternoon and when I got home from dropping them off safely at their homes after midnight, it was straight into my bed with a magazine and a chamomile tea and sleep came quite quickly.
Keeping my late hours does come in useful at times.

Today was overcast and not very inviting, so I poodled around my bungalow keeping myself busy doing housewifely things such as ironing and sorting out kitchen cupboards. That part meant throwing all the bits into the bottom cupboard and I'll deal with that one when I'm feeling a lot stronger!
I am such a domestic goddess that I even cooked myself a proper healthy lunch at midday.
When I think back to last year when I was so worried about having to give up work, it all seems a life time ago and I really wonder why I put myself through so much grief trying to get work each day, working full time and while feeling so ill.
Ok, it's scary knowing that I'll never have a proper wage packet ever again, but my stress levels have gone down on the pressure scale so much.
I can't even imagine what state I would have been in if still working full time with this end stage lung disease and dealing with mother and her imaginary friends, Shirley and Dolly!

Tonight was a different kind of treat for me through, as Jo, Julie, Ann and myself went to see 'The Taming of the Shrew' performed by a travelling Shakespeare Company at Cressing Temple Barns.
Of course being flaming June, I had on a long sleeve t-shirt, a tank top, a cardigan and a jacket, plus a big scarf around my neck, with a woollen poncho on standby. Thick corduroy trousers, long woollen socks and boots, plus gloves in my handbag as back up!
A thick blanket actually wouldn't have gone a miss either, but we are British and are used to our very capricious summers. Plus the cold was a bonus for the company, as the more you clap, the more it warms you up and the actors love it too!
Also Shakespeare gives your brain a thorough work out with trying to work out who is who and not to mention trying to keep up with the actors changing their roles throughout the performance, that kept me alert and warm too.
Everyone a winner... and the wine helped too.

Tomorrow is the first carnival of the season. Whether I go or not depends on the weather, as heavy rain is fore casted.
At least the egg timer has disappeared from my mind now since talking to my consultant on Wednesday and I won't worry as much about time racing past as I look forward to the different events for the summer months.
I feel at ease for the first time in ages.

Lots of love Debbie x

Welcome to my dream home

Hell, I hate it when I'm right. Did I not say last night on this blog, that I probably wouldn't be able to go to sleep again after the day's excitement?
Well I was right.
I was so mentally and physically tired last night, but I still found myself cleaning my kitchen blinds at 1.30am, trying to empty my busy mind so I could go to sleep. You know when you have eaten too much sugary stuff and have a sugar hangover? Well that's how I felt, lethargic and washed out, but unable to switch off.
But when I got into bed, my brain was full to bursting point of what I should have said, what I didn't say and what I should have asked him and the questions wouldn't cease going round and round in my mind.

Questions such as;-
1; Did I make it crystal clear when he asked me, that on a good day with the help of my 'go faster' wheeler and my portable oxygen, that yes I could actually make 200 metres. But I would have to sit for ages to recover from all that effort, but yet the very same day, I might not be able to make 10 yards without my head and chest trying to burst open?
Everything changes hourly.

2; Did I make it clear that although my last oxygen levels at the oxygen assessment clinic were higher than my normal, that my daily 'Docobo' readings were more low than the higher end of bad on a regular daily basis? And that I was relying on my oxygen more than normal just lately?

3; Did I make it clear that I was so tired all the time now and that I struggle on a daily basis? Or that my words were quite obviously muddled when talking just lately?

I don't think I did on any of these.
Must try harder next time.

When I did finally go off into an undisturbed sleep around five in the morning after yet another visit to the toilet, I had the most weirdest of dreams.
I was back at my old house where I was brought up. My eldest sister and my mother, who just happened to be in the bath and was sporting an American accent... must be Dolly Parton's influence again... were both there with me, looking just as I remembered them when we lived there.
Though I must point out that my mother has never had an American accent, on the count of her being Welsh!
In this dream, I was having trouble locking my dad's office door that led into the yard, which I often did, as my dad often sent me to check it was closed. I remember in this dream that I was pulling the huge big bolts on the top and bottom of the door tightly shut. This door was the other office door, but this one led into the house. I did this before racing back upstairs to bath mother.
The weird thing was about this scenario, apart from the fact my mother had turned into an American, was that she was fully dressed in the bath and I was about fifteen, though we had moved up to the village when I was about twelve.

I always used to help my eldest sister in the bath when she was pregnant. She regularly needed help getting up out the bath as she was like this huge beached whale... in real life not the dream... which looking at her nowadays is hard to believe as she was always the skinniest one in the family, but mother made me promise that I would watch over her, so I did.
What good I'd do is beyond me, as I was a skinny little runt then and if she fell, she would undoubtedly suffocate me and squash me to death!
But there were so many things that I could see in my dream last night, that were so precisionly correct, even down to the cold feel of that huge old lock on my dad's door and that special musty smell coming from my brother's bedroom which led off from the bathroom.

I'm not sure what this dream meant, but it was comforting seeing around my old home again and at least Shirley Bassey didn't leap out my brother's bedroom singing 'Gold finger!' Believe me, if it was my mother's dream then she and Dolly would both definitely be in it!
Maybe that was what I needed last night to feel old comforts?

I'm hoping tonight I will be tired out enough to sleep, as apart from closing my eyes while mother was chatting about 'Midsummer Murder' repeats, I haven't slept and I have to pick my sons and Reni up from a wedding later. If I continuously go to bed late, then I might as well make myself useful.

Lots of love Debbie x

Hoorah, he still wants to get rid of me!

Yes... yes... yes! My specialist hasn't changed his mind and my transplant referral letter is on it's way to me... hoorah!

This morning I felt absolutely dire after having hardly any sleep last night. Three times I tried to leave my bungalow to set off to the hospital to meet my specialist and each time I had to turn back as my stomach was doing somersaults.
I did eat my porridge first thing, but it was like trying to swallow mud, as I kept gagging after each mouthful. Not because of my cooking I hasten to add, but just because my nerves had got the better of me and I wanted to throw up.
Each time I go to see him now is worse than before. Usually once I actually get to the hospital then I am fairly calm, but not today.

The meeting with my specialist/consultant was a bit like a pep talk for the meeting with the Papworth panel really.
I do have a tendency to play things down when I'm out and meet medical staff as I don't want to come across as 'the' whinger. Ok on here I'm always whingeing I know, but it's my blog so I'll whinge if I want too, a bit like the old song really!
But as he said, he has known me for ten years now and knows how I have struggled on working for last few years and as he says 'I am totally bloody minded' and push myself too much at times. But they have to know that this trying to be 'normal' comes at a price for me and that I am deteriorating.
He wants me to be me, which is so they can see that I am worth investing in basically, but I have to be honest about how this is affecting my quality of life.
A lot of people would have given up and stuck to their wheelchairs, but I still try to walk pushing mine instead.

He apologised for that fact that I had taken what he said at our last meeting about the two year window for this transplant so literally. What he meant by that was although the cut off age was sixty, I would have deteriorated too much by then and I probably wouldn't be able to cope with the transplant.
I explained to him, that this is why most of my relationships since my divorce haven't worked out, because I tend to take what people say to the letter, especially if people give me a time frame.
'I'll call you' becomes 'When, in 15mins, tomorrow, next week... when?!' I do hang on peoples every word, bad OCD habit I know.

He also has decided that he wants me to try taking statins to lower my cholesterol levels. He knows that 5.1 is borderline, but he wants me to be in tip top form for when I see them at Papworth. But and a big but, if I get pains in my arms, I'm to stop taking them straight away.
He admits, very bravely I may add, that I am carrying extra weight now. But that is blatantly obvious to anyone who sees us when I hug him before I leave, as I suffocate him, bless him!

So basically if I haven't heard from them in six weeks, I must call him and that means I have six weeks to get in shape for them too. Also I can have coaching on how I answer their questions as well, as a lot will be riding on this.
I have ordered some new Barbara Currie, Yoga DVDs so I can do gentle exercise as well, as I am unable to go to rehab at the moment. I am going to try hard to get the rest of my body fit for this transplant and if it helps me look better, which will ultimately make me feel happier in myself, then that's a bonus too.
Hopefully I will sleep better tonight, but I doubt it as I will be thinking of things I should have said, shouldn't have said or should have asked him.
He is a poppet, but he is so quietly spoken that I don't always get to hear the whole question and end up wondering why he has a quizzical look on his face, so I must hone on my listening skills too.
A good, but mentally exhausting day, but hopefully more to come very soon.

Lots of love Debbie x

Fingers crossed folks

Is this a large glass of Pimms I see before me? Yep and it has my name on it!

Tomorrow I see my specialist at Broomfield hospital and hopefully I will find out that the delay in getting my referral to Papworth has all been sorted out now. And that my two year window to have the transplant in, starts from tomorrow instead of three months ago and that there is such a thing as the tooth fairy.
Yeah... right.
I am now a bag of nerves. What happens if they have changed their minds and I can't have it done?
Well I suppose once I have got myself up from off the floor where I will be holding on to his ankles and having a hissy fit to end all hissy fits and then eventually come out of my bedroom, where I will hole up for a month or more and would have grown a beard etc, I will get on with life.
Actually that last part isn't true of course... I couldn't stay in my room for more than a half a day!

If they say no because everything has changed, then I will book a holiday to Turkey in September when Julie and family are out there and pay for someone to arrange all my oxygen to be delivered over there, stress free for me and go while I still can fly.
That is of course if I can convince the specialist to sign a letter to say I am fit to fly. If he's said no to the transplant, then that's the least he can do really in my books.
Then I will book a fab cruise ready for next year and once again arrange for oxygen to be delivered, rather than me smuggling it on board and just go off and enjoy myself while I can.
So there is always an up side.
I know, who am I trying to kid?! But you have to make the best out of your lot in life and not worry about what you can't change. Isn't that basically what the 'Serenity Poem' says?

My mother has already got my nerves jangling by being in a foul mood when I went round to see her this afternoon. Every time I tried to talk to her about something that was on the TV etc or defend someone that she was moaning about, I was wrong or what did I know etc.
Not a lot obviously, otherwise I would know better than to be sitting at hers getting the rough end of her tongue instead of staying at home watching the afternoon rerun of 'Midsummer Murders' on the TV with a bar of 80% dark chocolate! Perhaps I could book her in at Midsummer for a holiday there!
I had already offered to take her out for a drive again this afternoon, but she had said she had fell over before I could finish asking her. To which I then added that I didn't think it would be wise if she was unsteady on her legs and said I would just come round for a cuppa, which is why she had a moody on.
Unfortunately this is what happens when you cry wolf too many times. I don't know for sure if she had fell over or not, but I certainly wasn't going to risk having her keel over this close to my appointment.

Still I have had a reprieve from Julie who has said that I could 'glamp' in her garden when she has her Pimm's day. It can be a mini holiday for me!
If I camp near her shed or attached to a special outside extended power lead so I can have my concentrator in my tent, than I can sleep outside with the others.
Obviously I'm going to have to check things out, but Yay hay I might be 'glamping' with the rest of them!
So if anyone out there who reads this blog knows of any reason why this could be dangerous, please, please, please step forward as you have till the 25th of this month to tell me please.

Lots of love Debbie x

Rain stops play

We had a welcome stranger arrive last night... rain.
I forgot how soothing it is laying in bed listening to the rain falling on the patio table etc, as you are dropping off to sleep.
It lulls you to sleep.
We really need the rain, as all the gardens were beginning to look parched. I've been informed that it has been an exceptionally good year for roses, but other plants and lawns are not coping so well and the farmers have been worrying for ages about the consequences the shortage of rain would be having on their crops.
And as it's not St.Swithens day until July, I'm more than happy to have some steady rain now for about a week.

In fact it was nice not to feel as if I should be out doing something and just sit on my sofa catching up with my magazines.
Although I did wander off round to my friend for a massage, only to find out that I'd got the day wrong and I was booked in for Thursday. Between my mother and me, I don't know who is worse at the old memory game?!
I picked Reni up from her work place this afternoon and we went off to have a coffee before doing a food shop. It amazing how quickly you can go from having a well stocked fridge to a fridge full of half eaten bits.
I do try not to waste food, but there was a quarter of a cabbage, that I had all great intentions of serving up with a lamb chop, but was still stored in the freezer.
Three very limp looking spring onions, some mouldy raspberries and a few left over strawberries that had seen better days.
Not even a side dish worth of rocket left in a bag and one dubious 'best by' egg that all got thrown away.
Plus a bar of intense dark chocolate with real orange bits that I ate over the course of the day apart from one square, because I didn't want to appear too greedy! I may go back for that before bedtime...

I do try to eat healthy and when I listen to what my friends eat throughout the day, I actually do eat very well... well apart from a rogue bar of dark chocolate here and there.
when Sam and Susie came for lunch the other week, they were really impressed just how healthy my fridge looked. Of course I had the dark chocolate hidden behind the Greek yogurt!
But I am only too aware that I have gained over a stone and a half in a year since my mobility has decreased, and all of it around my waist and I hate it.
I have decided to look on Amazon for some decent yoga dvds, as my old tape that I brought many years ago and loved working out to, goes all wobbly half way through. If I am doomed to be big, then at least I will be supple.
I have been told that I have slim legs and my arms are skinny, but it's the big bit in between that is getting me down.
At least the blood tests said that my cholesterol level is 5.1, which I can work on I know and I don't have diabetes, which looking at my apple shape is a small wonder.

If there is a skinny person inside me trying to get out, it's because if she is covered in chocolate, then I've eaten her!

Lots of love Debbie x

What if Derek, Dolly Parton lived next door?

A very pleasant day spent at Gosfield Lake watching the wake boarders on the water with my mother and Ann.
It wasn't the sunniest of days admittedly, but it is such a very peaceful, picturesque place to have a picnic and to relax. There was a large mixed age party of South Africans to our left having a family reunion over a BBQ and to our right, some campers, but you couldn't hear anything from either of them.
Mother watched the wake boarders with great interest. Some were taking lessons and learning and some were very proficient at boarding. Mother told Ann how 'none of them were as good as my eldest, her grandson, as he was very fast and could go up in the air doing somersaults.'
I did have to explain to mother and Ann, that this was where he made a bad error in his judgement and hit a strong cross wake which threw him. The impact of the somersault blacked his eye and gave him quite severe bruising down one side of him for quite a while!
Mother is getting very confused nowadays, with real life and things that she has read.
As she was telling us how she used to play with Shirley Bassey in Tiger Bay and they both got hauled off by the police back home for playing around the docks. The fact that mother is 19 years older than Ms Bassey didn't seem to register. Plus mother lived in Ely, which isn't that close to Tiger Bay. I'm sure she was taken by the ear to her Auntie Phil about something or other, as she was quite a handful by all accounts, but not involving Shirley Bassey.
She then found a picture of Dolly Parton in my magazine and told us how she also lived next door to us in Cardiff for a while. When I told her gently that Ms Parton was American, she just told me to ask my sister, as she'd remember living next door to her. Us, her children never lived in South Wales at all, only mum before she married.
I'm not sure whether you should correct them or just go along with someone with dementia? I'm going to have to read up about it, as I wasn't comfortable with laughing or questioning her.

Still daft ideas obviously run in the family, as I found myself agreeing to Ann's brain storm of 'Glamping' there at Gosfield.
Now if you don't watch 'The Only Way is Essex' and don't know what glamping is, then let me fill you in... glamorous camping... camping, but with all the pretty and essential bits needed in life and not roughing it at all.
For a whole 15mins I was caught up in it, ignoring the patently obvious flaws like small problems about my overnight oxygen, my daytime oxygen, my nebulizer and the fact I have the weakest bladder in Essex. Yay a holiday!
That was until I rang Julie to tell her Ann's amazing idea... see I'm completely blaming her now... rendering Julie speechless.
I am the girl who panics about a night out and here I am again, wanting to put myself at risk and doing something that I actually would hate doing even if fit and healthy and that's camping, which means sleeping in the outdoors, which I don't do... Duh, ok point taken!

I drove round to Julie and Derek's after I dropped both mother and Ann off and waited for Julie's usual term of endearment for when I've said something stupid and was rewarded today with the term 'knob chops!'
We sat talking about how I hated sleeping outside, but loved looking at the stars and somehow the conversation got on to Incas, Aztecs and bizarrely enough chocolate and the Maya prophecy about the world coming to an end in 2012. Derek pointed out that was when he would retire and I pointed out that knowing my luck it would be when I finally got my transplant.
Can you imagine the irony in that?
'Here's your new lungs and heart and bang, Oops... by the way the world has just come to an end!'
I would be one sulky angel if that happened. I would be standing at the gates with one very pouty bottom lip.
We then moved onto to our next subject, that maybe in 2012 that the big change in our world would be that we would lose some islands, but maybe some others would be born from the sea, considering all the extreme weather conditions that we had been having this year alone. And then we moved on, as you do if you have my butterfly brain, to islands that kept getting invaded.
Now Derek is always sensible when holding these conversations, me on the other hand... not a chance.
If there is a chance of trying to wind Derek up, then I'm there. My nickname should have been 'What if?'
I painted a very vivid picture of me as 'Boadicea' as Derek reckons that I am a totally control freak and can be a bit scary when using my sarcastic tone, but I might actually lose a bit of my scariness with a blue mobility badge on my chariot!
Thank you Derek for giving me the ammunition of coming up with sensible solid answers and loving the challenge of my childlike 'What if' theories and yes when the doctors are asking me questions about how I feel about having new organs, I won't unleash all of my weird theories on them.
A pretty good day all round today.

Lots of love Debbie x

Let's party

Get it on... the party girl has returned... three parties in one day!

Well ok the first two were quite sedate affairs and the last one I was too tired to talk very much, as I knew it would be a case of me sprouting gobbledygook if I did and I was spot on. God I hate it when I'm right.

I started the day at my physios housewarming lunch. I was lunching with my four expert physios, but I suppose you could call me an expert too... at having it done!
Anyway if I did keel over, I was in the right place today.
This nearly happened as I played 'knock down ginger' on a neighbours house earlier thinking I was at Hannah's new house even though I had a piece of paper in my hand with the address on.
When I realised my mistake instead of fronting it out and apologising to the owners, I legged it... well as fast as a person on oxygen can leg it!
Hannah's house was a lovely house and the garden was a real suntrap.

Next was straight on to Derek's mother and father's 60th wedding anniversary BBQ in Earls Colne. I do believe someone had moved Earls Colne as I honestly couldn't remember how to get there or even which way, even though I have been there many times in the past.
This confusion is getting a bit worrying now, although it has to be said, Ann is the worst map reader that I know of. If she has a map reading badge through being a leader at Scouts, then there hope for me yet.
That was also a lovely occasion held in their garden and I really felt a pang of jealousy that my marriage had ended after 29 years. Still that was by mutual consent and we are still good friends and I still nag him, so I am lucky I guess.
I was amazed at just how many different cards that they had, with only one repeat. I only had a choice of two in the shop where I brought mine, so I was very impressed with the range that they had. They even had a card from Queen Elizabeth II, how amazing is that?!
It was lovely watching how close all the grandchildren are to their grandparents too, warms the cockles of your heart.

Next and lastly on to our friends son's birthday BBQ party. There we were surrounded by bright young things which was lovely again, as I've known all of them since they were little. And my youngest son was there as well with all his group 'Hounds' and believe me, they really are bright young 'cool' things.
By this party, I seriously needed a cup of tea.
I can't believe that I said 'Nighty night' to them as I about to leave and it was the first time that I had even met the two newest members, the pianist and the bass guitarist. The shame of it, I sounded such a mum... So uncool!

I am now extremely tired and got short shrift for phoning my mother when 'Britain's got talent' was on TV.
Bless her I shall have to censor her photos from this film when I get it developed, as I took her camera by mistake to Poppy's and Les' anniversary and she will wonder why she doesn't remember being at the party of the couple cutting the cake.
I have to get up fairly early tomorrow as she has a new gardener coming round and then we are off to somewhere by the sea or by a lake. Depends on my energy levels.
So early to bed tonight.

Lots of love Debbie x

Is there a doctor in the house!

I realised today just how ineffective my medicine box is. Well actually I couldn't even find it as I believe it is under my wheelchair in the boot of my car and I couldn't lift the damn thing to look underneath. So I just panicked and drove down to the chemist and brought every sort of bandage that I could find in there!
My disaster today?
Reni slicing her thumb open on my food processor blade when washing it up.
Luckily it wasn't as bad as we first thought and thanks to cold water, a pantie liner and a lot of pressure, we stemmed the bleeding until I was able to do a more professional job with one of my newly brought bandages.
Still I think I deserved a 'Girl Guides' badge for my initiative with the pantie liner!
I couldn't stop her jumping around to let me put a makeshift butterfly stitch on her thumb though and had to nearly sit on her to spray her thumb with the chemist's spray to stem the bleeding! But after I told her the truth that it would actually hurt, she let me do it and it worked a treat so I could then dress it.
The irony of the whole thing was that the food processor had refused to work anyway and I had to make the basil dressing by hand with a small knife, so we were washing it up for nothing really.

We did have another really pleasant day before that point.
Reni came with me to get my monthly drugs from the hospital, of which I only have twelve and a half days worth, so I'm hoping this is a good omen for Papworth and not that the Pharmacist couldn't count.
God I'm obsessed with a place I've never seen.
We then did a bit of food shopping on the way back home and got some good ingredients for the next couple of nights worth of meals.
We both like eating well and cooking from scratch. I like to think that all of us are good cooks, my ex definitely made sure that our sons were and Reni cooks gorgeous Hungarian food, her mum should be very proud of her.
And then it was time to sunbathe in my back garden, reading our books and chatting before Reni sliced open her thumb and we went into flashing blue light mode!
Thankfully Reni is fine and had a ice cream for being a brave soldier.

Tonight I went to the cinema to see the new X-men movie which was very good, but very long. I knew it was long film, because my oxygen ran out as I was walking back to the car.
Thank goodness Ann had parked nearby, as that turned a bit scary too and was nearly flashing lights times two!
I had double vision and talking a load of gobbledygook!
I filled the oxygen unit up this morning and maybe I should have put some more in before going out tonight, but I should have had enough in there for the amount of time I had it on.
I hate being so reliant on these damn oxygen units. My days of being spontaneous have long gone.

So there you have it, another eventful day in my life... never a dull moment, not even in just doing the most normal of daily events.

Lots of love Debbie x

Legs... Ssshhh go to sleep

Ouch my legs were keeping me awake last night.
I think they call it 'restless legs syndrome,' I call it walking up more steps then my heart and lungs could happily manage in the day time and they were beating my legs up about showing off and having a go! I really didn't know where to stick them last night, so they were hanging out the side of the bed, then under the covers, then stretched out and then doubled up.
I just wanted to sleep.

I woke up today feeling very groggy and feeling every minute of my day out yesterday. It isn't all about the physical side of going out for the day, but the mental logistics of making sure I have everything in place too takes it out of me big time too as I'm a real worrier now.
Little things like which tank do I take? Do I have enough oxygen in my DD tank which weighs a ton and I better not take my liquid oxygen as sand could get into the works and clog it.
I am on my fourth unit now and the company get a bit tetchy when I call and ask for a replacement.
Or when did I last put new batteries in the pulsar? Even though I knew it was the last time I used it, which is when I had my angiogram and I have a kitchen drawer full of replacement batteries, I still panic and get myself worked up checking everything over and over again.
Will I be able to find somewhere to cough up my lung contents? Have I enough tissues and a carrier bag in case I have to do it unceremoniously behind a hedge!
And as we know already that I had a melt down about what to wear and took enough clothes for every season!
I sooooo look forward to the day when I just walk out my front door carrying just a handbag.
No 'go faster' wheeler, no wheelchair, especially no oxygen and not having to worry about getting back to take countless drugs. And just having a friend there as a friend and not as a carer.
Bliss.

Today was very humid and it would have been lovely just to have a good downpour and clear the air.
I was stuck at home today awaiting the arrival of my new mobile phone. I'm a bit of a technophobe and I hate new things with knobs and buttons that give me umpteen choices on doing things wrongly.
Sam would always say that I was a 'button pusher' when we were doing our ECDL courses. I could never wait for the instructor to finish what they were saying before my finger couldn't stand the temptation any longer and pressed something that did the complete opposite of what they were trying to get us to achieve.
I wasn't popular in classes, apart from with the thick ones that I made look proficient, as the instructor would have to spend ages trying to sort out just what I had pressed!
But I have been trying to sort out a good mobile plan and I think I have cracked it this time.
Anyway, muggy air and hard to breathe today. So thankfully no steps to climb, just a TLC day for me.

Lots of love Debbie x

We're all going on a summer holiday

'Pick yourself up, dust yourself down and start all over again'... So the old song goes and do you know what, it's beautiful out there today so that's a good place to start. No grey skies out there or in my mind this morning.
Yay!
Besides I'm going on holiday today, double yay! Well actually I'm not, I'm just going to Frinton for the day with Reni on the Church coffee morning group's outing, which is so a million miles away from eating soup at 3am on the way back to my hotel after a night out on my Turkish holidays.
But I might as well be going on holiday for the amount of clothes that I had packed in my beach bag. I wasn't going to let those blue skies fool me... Oh no... or the BBC weather forecast that said no rain and temperatures of 64 plus today... Trust no one is my motto from now on.
Must pack shorts for beach as can't get suntan through skinny jeans and especially as I don't totally trust weather fore cast.
A strappy summer top in case it gets really hot on the beach, but also a long sleeved t-shirt because the last time I was on that beach, it was a tad nippy, plus a sweatshirt because the cardigan I'm already wearing over another cap sleeved top, might not be warm enough.
In fact if I wear everything at the same time, I'll be ready in case it snows!

But it was just what the doctor ordered today, we had a fab time.
It was rather blowy on the beach and I did manage to wear all my clothes but the really strappy top and in fact I did very nearly manage to wear them all at the same time come the end of the day, but it was fun.
I love people watching and watching all the yummy mummy's with their off springs on the beach was lovely. I was happily reminiscing of my own boys school holidays on various Essex beaches. They both loved the beach and I have to admit, when it come to building speed boats, aeroplanes and dragons in the sand for them to sit in, I was pretty damn good!
I also sat watching a group of giggly teenage girls and I went even further back reminiscing to seeing me on my own school holidays with my friends spent on the beach when out on Youth clubs trips and Salvation Army outings.
Hard to believe that my little beach babes are now in their thirties and that I was once leggy and skinny like the teenagers I sat watching today.
The latter was definitely hard to imagine especially when trying to haul myself back up the very steep slope from the beach to the cliff top, as there was no way I would even let Reni try to push me up that one and we couldn't see another route, even though there must have been one somewhere.
I walked up four steps and rested, tried another four and rested again. It took a long while, but I did it. I couldn't see straight when I got to the top and I thought my heart was going to leap out my chest and my head felt like it was going to blow up, but I did it.
So this week I have achieved something. I wonder if I could achieve getting my eldest son to buy a beach hut though???
A day of smiles, fish and chips, ice creams and sun on faces... lovely jubbley.

And we both slept the whole way home!

Lots of love Debbie x