I want a duvet day

Ah bum...

I spoke to my specialist's secretary first this morning and no wonder I haven't heard from Papworth, as my letter hasn't gone to them yet because of the angiogram hold up.
To say that piece of information hit me like a lead balloon was an understatement.
I couldn't even cry, just sat cross legged on my bed in a stunned silence.
Thinking logically, I don't know why I even thought it had gone through as the NHS move at a different pace to the rest of us. But they had the tests results for a while now, so I'm hoping that this delay isn't due to the fact that she has been on holiday for the last week or more and the results or the letter has been sitting there. That would be too cruel.
Ah well brush yourself down and start all over again and again and again.

At least my pension has been paid into the bank, so that's something going right for me. In fact it wasn't even late, just me being thick and not realising that today was actually the last day of the month not yesterday.
The system goes that you get paid on the last day of every month, unless that day falls on a weekend or a bank holiday and then its paid in on the nearest Friday.
So it was a case of me being thick and my brain not working properly again.

Not very chatty today I'm afraid. I just feel like I'm going through the motions today, putting on a brave face and that tonight when the light is turned off and I feel completely on my own, I will probably have a good weep then.

Lots of love Debbie x

For doubting Thomases

Poor old Derek was only back off his holiday for about three hours before I had my first disaster. I have managed for two weeks to keep myself out of trouble and he comes back and disaster strikes.
I knew that 'pre-thank you' DVD of 'The King's Speech' would come in handy before long and today I excelled myself and broke my front door.
I was out the front planting up some herbs and had left the front door on the snib to stop it locking me out, when a gust of wind slammed the door so hard it's a wonder it didn't smash the glass too.
Like an idiot in these windy days, I had also left the back door open and the gust had blown straight through my bungalow, nearly taking my front door off it's hinges and buckling the snib.
So embarrassing to have to call for help that quickly, but I now have a working lock again thanks to my hero.

Things didn't get a lot better as the day went on, as we decided to go to the cinema to see 'Hangover II' this afternoon and I wandered into the wrong auditorium first of all. Next I needed to go to the toilet before the film started and because my brain was a bit squiffy thanks to my oxygen levels being very low again, I kept repeating the screen number 2 to myself so not to make the same mistake on the way back.
I smiled at the young girl on the ticket desk and wanted to say that I was just popping out to the toilet, but unfortunately thanks to my brain being it a muddily, it came out that 'I was just popping out to go to number 2.'
Not sure who was more shocked by that statement!

So anyone out there that have the wrong impression about me and think that I spend my time going here, there and everywhere having fun; Well yes you're right. I do try to, because otherwise I'm giving in to this disease and that ain't going happen just yet.
But believe me, it's hard work just going to the cinema when it feels like you have an elephant sitting on your chest every time you walk and that you have to lean on your friend just to walk a few yards.
Try running like your live depends on it and when you are doubled up trying to get your breath back, that's how I feel when getting dressed in the morning, hanging out my washing, cooking or just doing whatever normal is.
If you laugh at a funny film with a mouthful of coffee, you dribble it out everywhere don't you, well that's me but bringing up a mouthful of phlegm and I envy one of you around me having a real belly laugh.
You know how embarrassing it is when you can't remember the persons name in front of you who you haven't seen for a while. I have that, but just forgetting words in every sentence I make or forgetting what I was saying in the first place. For years I thought that where I had coughed so much and so hard, that my brain had come off it's hinges!
So yes that is why I grab life and go for it and if you have any sense at all, you'd grab every moment too. Life is for living however crap the tools are that you are given to work with.

Lots of love Debbie x

Fighting dragons and guilt trips

Well whether it is psychosomatic or whether the tablets are already beginning to help I don't know, but what I do know is that the phlegm today is a lot looser, so there for coming off my chest easier, the headache although still there isn't as bad and the tiredness comes in waves. So a good call of judgement I hoping.
Probably I've not helped myself by the amount of walking I've done today, but I do feel as if thankfully the proverbial black cloud has lifted a wee bit from over my head.

I was going to sneak off to Hedingham Castle today without taking mother with me this morning. I knew she wouldn't make the walk up the very steep slope to castle. In fact I knew I wouldn't make it either, which is why Greta volunteered to come with me to push me in my wheelchair and very nearly put her own back out in the process. Thank goodness for strapping young men who come to rescue a couple of old damsels in a lot of distress!
I have taken mother to somewhere like that in the past when I could get about easier and I've left her watching something from the comfort of the car while I've done a whistle stop tour around the event. Not very satisfying for either of us and as my sister told me to be like her and to go off to places on a Sunday and stop feeling guilty, I decided to go without her but not tell her. Coward I know!
Besides Greta wouldn't be able to push both of us around and at £12 each for an entry charge, I did not want anyone to be the saddo left sitting in the car.

Anyway before I left, mother phoned and wanted me to come over and sit while she had a shower. Sounds easy peasey I hear people say, but nothing is that straight forward with my mother. Bless her she is a wobbly as Bambi on ice when she stands now, and me complete with oxygen pack on back, had to help dry her.
Now it's an understatement to say I'm not feeling my best at the moment, but she may have looked like Bambi, but I looked just like Nemo flapping about out of water by the time we had finished. I sat on the floor gasping for air and swearing under my breath wondering what the rest of my siblings are doing today.
'Oo I really can't go anywhere today dear,' mother said to me and I had to refrain from punching the air with my fist, 'so we'll go out tomorrow instead.'
Ok I can live with that and guilt cloud removed...Yay!

So I got to go to see the jousters battling each other in the grounds of the castle on their huge powerful horses.
I had a jolly scrummy rabbit burger, a bit of a modern twist on medieval meal, but then rabbits weren't introduced into England till a lot later anyway.
We also had some lovely homemade lemon juice and drank while watching the jester entertaining a lot of under three foot tall children all armed with swords. Have to admit there were quite a few youngsters there that I could see in counselling in years to come with anger issues. The way that the poor old jester was having jump about to save his knee caps was more than any jester should have to do on a sunny Sunday afternoon to earn a crust!
If you thought jousting with big pointy sticks was scary, believe me you'd rather face that then lots of hyped up four to six year olds any day, running towards you with swords slicing through the air!

I felt so much better in myself after my Sunday afternoon out with just Greta and me, that I went back and cooked mother's Sunday roast with a new improved demeanour. A win win situation I think the smart people would say!

Loys of love Debbie x

Tickets please for the treadmill

And I have reason to believe that I'm back on the monotonous treadmill of chest infections.
The evidence; repeat pattern of headaches, extreme tiredness, extra phlegm in a familiar hue of green, they have all presented themselves, but the jury i.e. the respiratory team have a skeleton staff at the office for advice over the weekend, but wouldn't really be able to do anything without a sample.
I will probably get a rollicking for this, but as I had some unopened antibiotics in my medicine chest, I have starting taking them.
The local doctor gave them to me when I had the infection in my nose and eyes, and to take if I thought it was getting worse and spreading into my sinsuses over the Easter holidays. And in my defence, they are sore again so I thought that the Amoxicilin just might take the edge off my chest as well before anything takes hold.
A executive decision.

I had to do something, as I am due to see my specialist on the 8th June and there is no way on earth I am missing that appointment, because I need to know what the hell is going on with my referral to Papworth.
If I'm not well enough to go in to see him, and he sure as hell doesn't do house calls, it could be weeks before I get to see him again and I need answers and I need them now please.
The sentence that he said to me about only having a two year window to do the transplant has engraved it's self into mind. God I hate that term... a window... because all I can see now is a bloody great big egg timer with the sand flowing through it too quickly for my liking and I'm now down to one year and nine months. All that celebrating and hugging in his office has all fizzled down to nothing.

Not only am I waiting for that letter, I appear to be waiting for my payment slip for my pension to arrive too as this month nothing has been paid in.
I had really odd amounts of payments from the benefit people last month, and as they were still trying to make up their minds just how much I'm supposed to be getting, I thought they must be back payments and now this month, nothing from them either.
Is this a conspiracy plan between the NHS and the government to worry me to death so they won't have to do the transplant and then save money? If it is then they are doing a good job on me!
Please if I promise to be good and bite my tongue with mother and go to bed at a reasonable time, can something just be straight forward in my life for once?

Lots of love Debbie x

Cobwebs away

It must be true what they say about your blood getting thinner when you get older, as I have been cold all day again today. Well apart from when I'm having panic attack hot flushes or menopausal hot flushes... Coo isn't it wonderful being a female!
But my nose and my feet at this very moment are freezing and last night in bed my feet were like blocks of ice, so I had to put them under my patchwork quilt which lies at the end of the bed to try and heat them up.
Today I have on socks, my boots, one jumper and a big thick cardigan/coat to keep me warm and it was only Tuesday that we were sitting in the garden sweltering. No wonder we all get colds.

Maldon this afternoon was a bit on the chilly side and even Reni said she felt like sleeping in the car where she was so cozy after eating our picnic.
We decided to brave the elements and go for a walk and get a cup of tea. Mother didn't want to leave the car, which worked out better for me as Reni could push me down the prom to the little tea huts. Otherwise I would have had to rely on my 'go faster' trolley and if I started now, I might have got there by Monday!
Actually it was quite warm there out the wind, but as soon as you stepped out the shielded area, the wind certainly blew away your cobwebs.
With the teas safely encased in a special tray, we decided to walk down to the end of the prom so I could see the statue of Earl Byrhtnoth that I could just make out from the car park and has been tantalising me for months now.
Earl Byrhtnoth was the leader of the Anglo Saxon force who fought the Vikings in the 'Battle of Maldon' 991 AD. He looks a scary fellow, not one that you'd want to meet in a dark alley after closing time!
I'm not that sure that I could walk that far even with the help of my 'go faster' trolley, so having Reni with me today and mother's reluctance to leave the car was a real bonus.
Don't get me wrong, I like taking mother out, but I do rather feel even more disabled than I am, by just having to sit there with her in the car. I'll never forget that moment when I fell asleep once there in the car and when I woke up and looked from left to right, all the OAP car owners were sleeping too. Ooo the horror of being old before my time.

I had my physio at mine today. Sadie came after rehab and I was really pleased to see her as my phlegm has been extra hard to bring up today.
Even Sadie had to work at it to empty my lungs, as it was very thick and there was a hell of a lot down there, so no wonder I have been extremely breathless and tired this week.
I did have to surrender in the end, as I was feeling quite sick from all the retching to empty my lungs out and by the time she left, I needed a rejuvenating sleep.

Ann picked me up later to drive me over to Lynn's in Suffolk, as it was Lyn's turn to cook our Friday night meal, which was very yummy as usual.
Her cottage is lovely inside and out, but the garden was particularly lovely tonight as the garden is just beginning to come out in bloom. The roses over the gate smelt divine in the dark. You are probably more aware of the heavy scent of a night time.
As Lynn goes off on holiday next week, Julie returns and I have really missed her. I'm hoping she caught the cruise liner out of Russia and that they are not making their way home on foot, as I haven't heard from her since!
Where ever you are Julie... I miss you hurry up home!

Lots of love Debbie x

Damp squids all round

Today it was trying it's best to rain, which is much needed by the farmers and I have to admit as someone who gets very tired watering my tubs, for all us gardeners too.
But alas apart from a few squally showers the day turned out to be a grey damp squid.
A bit how I felt really.

To be honest I did rather feel that my mother had hoodwinked me last night into taking her out today. So when I rang to say I was putting the pick up time back an hour because I wasn't firing on all cylinders today, I was pleased when she said she was resting on the bed too.
I'm ashamed to say that I didn't hang about when taking advantage of this information and cajoled her into agreeing it would be better to leave going out until tomorrow as originally planned.
As it turned out my brother and sister-in-law called round to see her and she would have missed out if we were sitting staring out through the car window and rain at some river somewhere, not exactly awe inspiring.

I honestly did feel very unmotivated and lethargic today and for most of the morning I just sat and read my book from the safety of my sofa. Mind you that wasn't a bad thing as I'd already had a telephone call from the Respiratory team first thing about my heart rate being high again on the 'Docobo' reading and I was told to rest up.
It's no good trying to explain this to mother, as she doesn't understand and I really don't want to worry her. But when I did eventually go to the shops and round to hers with all the toilet rolls etc that she desperately wanted, I found enough toilet rolls in her bathroom to service Liverpool Street station toilets for the day!
At that point I had a Reggie Perrin moment of imagining her wrapped up in them like an Egyptian mummy, only tied to the chair!

I went home feeling sorry for myself and crawled back onto the sofa with a cup of tea.
Tomorrow I hope I get my mojo back and that I feel less like a deflated balloon. After all it's Maldon again tomorrow for another picnic... whoopee. Saving grace is Reni is coming so hopefully it won't just be sitting inside a car eating sandwiches, but we may venture out and eat our sandwiches by the river.
Goodness I'm a miserable sod today... so sorry.

Lots of love Debbie x

Look into my eyes....

Not a bad day today, just spent slowly making sure that I got my strength back from yesterday before doing much.
Who would have thought that a day with friends sitting chatting in my back garden in the sunshine would wear me out so much and that I'd have to have a day to recover.
If anyone had told me five years ago that this would be how I would act now, I would have laughed in their faces. Me the original Peter Pan. I was working full time at the university and on a Saturday night working behind the bar of our local and I could still fit in looking after my mother, going out a couple of times a week to either the theatre, meals or just generally enjoying life to the full.
Thank goodness that I did!

Today my day was spent in slow motion. Once I got dressed and after lunch, I got myself into gear all be it a slow gear, I popped down to Cressing Temple to get some ideas of what was going on there throughout the summer.
A Vintage Fayre, Taming of the Shrew and a posh food festival just to name a few things.
I need events in my life to look forward to, always have and more so now as I have no holiday to look forward to.
Next stop was to garden centre to buy another pot for my frontdoor plants, as one of mine fell over in the wind and broke. Of course I got side tracked and brought some more herbs, but I did have some vouchers so not spending too much money in there, hoorah!
I scared some lady while in the herb section. She must have thought my heavy breathing was coming from some rabid dog behind her, as she spun round looking at knee level and was very surprised when she saw me there, an old dog leaning on a trolley full of plants!

So this old dog picked up Reni from work and we headed off for an injection of colour into our lives at our favourite store 'Townrows'.
We had a drink and cake before wandering around the store, just window shopping of course until before I saw some fake tan... Oooo I can look like I've been away on holiday even if I don't go away. And bonus it doesn't stink of chemicals.
Mind you last year when I came home from my freebie holiday in Cyprus, my tan looked like some strange patchwork quilt, as parts of my back had gone a beautiful shade and other parts decided no way. So Reni is in charge of making me an even colour all over so I can wear a dress with bare legs...Bliss.
I then started chatting to the young lady on the make up counter about eye shadows and before I knew it, I was out my wheelchair and propped up on a stool being made up.
I did think that she had done a good job, but it still felt very odd having your eyes fully made up like that. I will buy some of the products eventually, but I wanted to see every one's reaction first.
Ann's was one of 'I know you look different but why?' and as she said my hallway would look like a brothel, she doesn't count anyway!
Mother was totally oblivous to my make up and just carried on telling me she was bored again, so maybe it didn't look over the top?
Beryl and Jacky really liked it and Beryl agreed with me that she wishes she was more adventurous when she went out.
Reni loved it.
I'm still not sure about all of it yet, so we'll see.
When I am feeling worn out etc, it's always a danger period for my purse, so I will try the 48 hour test of do I still want it after that time before I buy. Maybe sun kissed legs with give me the tonic I need at the moment, though a letter would be a better tonic!
Nearly went a whole day without mentioning the letter... sorry folks!

Lots of love Debbie x