Sleep Deprived and Grumpy

I'm going to have a small moan, please stick with me it will be over soon.

I left the decision about going back to work until this morning as I thought I'd have a better chance of knowing how I felt when I got up. In the end fate took the decision out of my hands by giving me the worst night's sleep I've had in a very long time. I was hot, I was cold, I was uncomfortable, I didn't feel sleepy, arrggghh! It just went on and on. The last time I looked at the clock it was four, the next time it was ten to seven. I got up and rang work and, for some reason I couldn't fathom, was put through to my main boss. I explained the situation and he was nothing but sympathetic, he told me to take care of myself and to only come back when I was better. I went back to bed and dozed fitfully until eight when I gave up and got up to make a cup of tea.

Enjoying a cuddle on Mum's lap

My problem is with someone I know, who has so little going on in their life, they've decided to monitor mine. This person regularly complains very loudly about those they work with who are off sick. In my case they have made it very plain that they don't think I'm 'that ill' as if I were really 'that ill' I wouldn't be working. This attitude to disability seems to have come from the dark ages and cannot understand why this person has suddenly become like this. We used to be friends but now it is as though I'm their worst enemy, but I digress. I have to say my bosses and supervisors have been nothing but brilliant, but of course they have been told a lot more about my situation than some others as I keep my problems for those that need to know. However when I go off sick I'm labeled as 'pulling a fast one' etc, etc by this someone. Now thankfully most people know that I do not take sick days for no reason. I've been in work when I can barely walk so when I say I'm too sick to go in, I'm too sick to go in and that isn't questioned by anyone except this someone. I know I shouldn't let this someone get to me. The problem is theirs, not mine but it is so bloody frustrating to know that there is someone out there who just doesn't believe you're ill, even when you are on the transplant list. Mind you they probably don't believe that either.

There are a few possibilities that have gone through my mind as to why this person has broken off our friendship. Maybe this person is so distraught about my situation they would rather distance themselves from me than risk loosing me. Maybe this person is frightened of the way I'm dealing with my situation knowing that if it were them, they wouldn't cope half as well. Maybe they disapprove of transplants, the problems started when I was going through the assessment process so this is a real possibility. Or maybe they are just pig ignorant with a nasty streak a mile wide that I failed to notice. I doubt I'll ever work it out.

Bloody kids!

So back to pleasanter things. The stew was delicious and, as everything was soft, I was able to eat a fair portion. That made me sleepy so I dozed in front of the TV for an hour, completely missing the programme I intended to watch, before spending the rest of the afternoon reading. It was a quiet day with both boys away from home and such a contrasts to the boisterous Saturday. Poor Tarmac was made the butt of a joke when Andrew put a tin foil hat on him. I don't quite know why but I took a photo. He was much more relaxed yesterday in the peace and quiet and dozed on my lap for most of the afternoon.

Andrew arrive home from his two night shifts at around eight this morning. He told me to wake him at twelve and then promptly went to bed. I am anticipating as much success in getting him up at twelve today as I had getting him up at six on Saturday. Sigh!

Well my eyes are trying to close so I'm going back to bed to see if I can get an hour or so. Knowing my luck I'll wake up at five and won't be able to sleep tonight either.

The Frog's Chorus

Went to bed really early last night to try and counteract being awake at four on a Saturday morning. The wind was howling outside and there was the occasional drumbeat of rain drops on the window. Very comforting, very soothing, I went out like a light.

I awoke this morning to bright sunshine and high winds. Perfect for drying the pile of washing left behind by Andrew, so Peter loaded the washing machine and returned to the bedroom armed with tea and the morning papers. Following a long relaxed read I had a long relaxed bath and then, with Peter's help, hung the washing out. By the time I'd done all that it was ten and time for yet more tea. Of course the minute we sat down with our cuppas the weather changed and now dark clouds are scurrying overhead threatening rain. Just typical!

Yesterday was a good day. In the end Andrew woke naturally about ten thirty and decided to stay for lunch so he could see Laurence before going back to uni. I am often asked why he is still at uni when all the other students have gone home. The reason is that his is a very intensive course and involves six weeks of placement with the ambulance service in the summer.

We had a lovely pasta meal, which I did manage to swallow but we talked, of course, and this morning I feel I'm almost back to square one as my voice is a lot more croaky but not as sore, though the frog in the throat has returned. I'm keeping my mouth shut again today in the hope I can repair the damage but the question of work now raises it's ugly head. My job is basically talking. I answer phones, discuss problems, offer solutions etc, etc, all by talking, Then in between calls I talk to my colleagues, the people in the canteen and anyone passing who says hello. The only time I'm not talking is when I'm in the loo or eating. On top of that it is a loud environment where whispering is just not going to cut it. I'll feel guilty about not going in as physically I don't feel too bad, however am I going to be any help if I can't talk properly? This is a decision I can only make later in the day. If my voice improves dramatically then I'll go, if I'm still croaking then obviously I stay put.

I know I've promised to be nice to myself but it is really difficult when I don't actually feel ill. I feel tired, yes but not ill. Of course, as with any serious illness, the name of the game is prevention. As I already have one infection my defensives are weakened and it would make it all too easy to pick up something else or for the current infection to worsen and spread. This is what I think a lot of people don't understand when it comes to PH. If you look well, sound well and by your own admission, feel well then why can't you go to work, go shopping, go to the theatre etc, etc. They just don't get that this stage is actually the most dangerous point for you. Someone once told me, 'you only have a cough, that's no excuse to stay off work'. Feeling guilty I went back to work then ended up taking three weeks off, including one in hospital with pneumonia. If I'd stuck to my guns and taken the extra couple of days as I'd planned then I'd probably been OK. This is not something I plan to experience again but it is hard when you know there are people out there who think you're 'slinging the lead'.

Today I'm making my famous Moroccan stew for lunch. I love one pot cooking, it is easy, quick and less washing up. This is just  'shove it all in the pot and slam the lid on' cooking so no effort at all, perfect if you are feeling a bit under the weather but want something tasty to eat. I'm sure I've probably shared this before but if I haven't and you fancy a go, here's the recipe.

Moroccan Stew

1 tablespoon olive oil
1 red onion thickly sliced
2 carrots cut into chunks
450g beef steak cubed (lamb works well too or Quorn or soya if you want to go veggie))
1 tablespoon of ras el hanout spice (most large Tesco's have this, it comes in a silver tin)
2 garlic cloves crushed
1 tablespoon clear honey
100g soft dried prunes diced (really you cannot taste them when cooked)
500ml of beef stock ( lamb stock or veg stock if you are doing the lamb or veggie version)
100g soft dried apricots halved
200g tinned chickpeas (400g if doing the veggie version)
couscous or rice to serve.

Over a medium to hot heat pour oil into a deep casserole pot and fry off onions and carrots until soft. remove from pan, add a little more oil if needed. Toss meat in the spice rubbing well in until completely add to pan and brown on all sides. Return the veg and add the garlic, honey, prunes and stock along with any left over spice. Cover and cook on a low heat for 50 minutes. Remove lid and add apricots and chickpeas, cook uncovered for a further 10 mins then serve with couscous or rice. Simples and delicious! This recipe serves four and freezes well. When I have room in the freezer I make double so I always have a nice warming emergency meal on hand.

Well now I've shared it, I'd better go and cook it.

Conflict of Emotions

Bonnie Tyler eat you heart out!

Yes the voice is back, albeit a croaky one. I've been quite good the last two days and kept my mouth shut for most of the time as instructed, so today is the day I can start talking again. I'm being careful though and am only speaking very softly, almost a whisper, so as not to strain anything. On the plus side my throat feels much more comfortable and I no longer feel like I have a golf ball stuck in it.

I've lived on a diet of soup, yogurt, smoothies and mashed potato so far but today I'm going to try something a bit more ambitious and am making a pasta. Frankly I'm bored and need something with a bit more bite to it, literally. And of course Laurence is coming over for lunch so I can hardly serve him a pot of strawberry yogurt.

I woke early this morning, around four, just in time to hear Andrew going to bed. He is starting another weekend of night shifts today so forced himself to stay awake as long as possible in order to adjust. This has left me with a dilemma though. His instructions were to wake him around six, so he could travel down to his digs nearer the ambulance station, where he'd continue his sleep until it was time to go to work, around four thirty this afternoon. So far I've called him at six, seven and nine. Each time he has said he'd be up in a minute and then promptly fallen asleep again. It is now ten and he is out cold. I am tempted to leave him as I know he will have a less disturbed sleep here, his neighbour plays music very loudly all day, but he'll have to get up earlier. I think I'm going to lean towards quality rather than quantity on this occasion. It may mean he is more tired tomorrow morning coming off shift but that might mean he sleeps through his neighbours music. Just hope he sees it that way.

I had a weird dream/nightmare last night and can't make sense of it. I was at a hospital and I'd obviously had my transplant as the doctor was telling me that my lungs hadn't taken and I only had eighteen months to live at best. The next thing I know I'm at a party and am cheerfully telling people that I'd had a transplant and was so happy. The dream ended there but I can't make sense of it. Why would I be released if the lungs hadn't taken? And why give me such a long prognoses? Very weird, but then since Anne's death I have been having some very strange dreams. I'm also having problems when awake. One minute I'm desperate to get the call, the next moment I'm almost in a state of panic that I might actually get the call. Underneath it all is the dread that, after all the waiting and fighting to get on the list, that when the call does come I'll refuse the transplant.

I really do not know what to do about this. I was so sure that I wanted to have the transplant and now I'm not so sure. When I'm well I think 'well PH isn't that bad, I can still work, I'm still out and about'. Then I think 'I hate this machine, I just want to be able to go for a walk, climb a hill or go swimming'. I'm not usually indecisive or unsure of myself but for some reason I now just constantly swing from one extreme to the other. I've spoken to my counselor about this and she says it is normal to have doubts, she'd be more worried if I didn't. So I guess I'm just going to have to work through it and hope that when the call does come I'll have the courage and confidence to say 'yes'.

Well that's just about it for today. I'd better get myself down to the kitchen to prepare for lunch. At least I'll get to feed Andrew before he goes, just hope he sees that as a benefit.

Chopping, Dicing, Shredding and Slicing

Well I've had my Tefal multi choppy thing for a week now and have finally tried all the blades.

The overall impression was that things improve with practice, especially as the instructions that came with it were hopeless. It was a bit fiddly at first but I soon got the hang of it and can now report back.

It is excellent for shredding lettuce, cabbage etc, in fact I'd say this is what it does best. It is ok at grating cheese but much better with carrots. Slicing cucumbers, carrots or onions is good, tomatoes a disaster. As for dicing onions, well that's a bit of a mixed bag and I thought it would probably have been better to do them by hand.

My advice would be do not use on soft fruit and veg such as tomatoes or bananas, you'll just end up with mush. Make sure your cheese is hard, anything even slightly creamy sticks together and instead of nice even gratings you end up with gooey lumps. I tried it on cheddar and still ended up with lumps, especially on the fine grater. It was excellent with Parmesan though. Finally if you value your eyes and want evenly diced onion do it by hand. It squirted out so much juice the whole family had stinging eyes, even those not in the kitchen. I thought I'd gone blind and still ended up having to chop some of the bigger pieces by hand as they were too big for what I wanted. It you've got a really hard veg such as swede slicing seems to be the only option, it certainly wouldn't dice.

Now of course I'm still learning with this machine and maybe the more I use it the better I'll get. Yes it has saved me time this week, and sliced fingers, but it isn't as good with everything as I'd hoped it would be.

I'm feeling a bit better and slightly alarmed.

Reading the leaflets I got with my throat medicine I discovered a rather worrying thing, especially as I take inhaled corticosteroids. If you take a lot of these inhaled medicines you are more prone to throat infections or, even worse, thrush. The problems is that no matter how hard or deep you suck some of the drug will land in your mouth or the back of your throat and stay there until you swill it away. This can interfere with the delicate balance of bacteria that lives in your mouth and throat and set off fungal infections etc. The danger with thrush is that untreated it can travel down into your lungs, something all PHer's or anyone suffering with lung problems need to be aware of. The prevention is very, very simple thankfully. Swill and gargle with water after taking your inhalers. This will wash the stuff away and if you want to be doubly sure swallow a bit of fresh water, not the stuff you gargled with, to ensure nothing sticks in your throat.

Now I've been on these inhalers for years, long before I got PH, and have never once been told to swill my mouth after using them. If you use or you know someone who does please warn them because the medical profession seems incapable of doing so.

The doctor didn't say I had thrush but I'm willing to bet that was why she took a swab, to check.

Having said that my throat is more comfortable today but my voice is still squeaky. Overall I'm still pretty tired but feeling not too bad. I'm living on soft foods, yogurt, soup, fruit but I don't mind at least I can eat all the stuff I love.

As I don't feel that unwell I went out briefly to supervise the Tesco shop, if I left it to my men it would cost twice as much and they still won't have what I want, and witnessed a shoplifting attempt. The chase left the shop and carried on outside. I'm not sure if they caught him, I hope so, thieving scum bag. The fresh air did me good but I was almost dead on my feet coming back. The rest of the day is going to be spent with my feet up doing nothing, followed by a long sleep and we'll see what tomorrow will bring.

Excited as Laurence is coming to lunch tomorrow. Doubly excited because my cousin has booked her tickets and will be here in December. I'm hoping I'll have had my transplant by then so I'll be fit enough to really enjoy her visit. Here's hoping.

Well the settee calls, until tomorrow.

Another Day, Another Infection

This is an early blog due to the fact I'm at home again, this time with a throat infection.

I've had a sore throat for going on a week but it has been mild so I've gargled with salt water and just got on with it. Then yesterday I felt overwhelmingly tired and my voice was a bit croaky. I just thought it was the residue effect of the fun day I'd had on Tuesday. I was so tired I was in bed by nine and almost went straight out, I didn't even have the energy to read. When I woke up this morning my throat felt like I'd swallowed glass and my voice was practically non existent. I rang work then went back to bed until the doctor's opened.

I was lucky enough to get a cancellation but my heart sank when I actually walked into the surgery. My favourite GP in the practice retired last month and I was face to face with her replacement.

Like most PHer's I dislike meeting new doctors because they do one of two things. Either they pretend they know more about the condition than you do, after all they are the medical professional and you are just the unqualified patient. Or they don't believe you when you say you need things like antibiotics etc. Thankfully this was an altogether pleasanter experience than I was expecting. She was quite young and willing to listen to me. I got the impression that she'd either encountered PH before or she'd been warned about me and had bothered to do some research. I know for a fact, as they've told me, that I'm the only PH patient they have and the only person waiting for a transplant so I'm their 'special' patient. This status ensures I get to see a doctor on the day I ring in no matter how full they are, which has saved me from ending up in hospital on more than once occasion. What ever the reason I was so grateful not to have to explain everything to her and then argue that I did need something stronger than salt water because of my poor immunity. She did look a little shocked when she took my blood pressure and oxygen sats but I assured her both were in normal range for me, which she accepted without argument, result!

After a lengthy examination including the taking of a swab from the back of my throat, she prescribed an antibiotic mouthwash that I'm to gargle with four times per day. She said she preferred to give me this rather than conventional tablets as there is less likely hood of it getting into my system and upsetting my other meds such as my warfarin. She also gave me a throat spray which will sooth the inflammation and help with the pain. The worst bit was when she told me to limit my talking as much as possible and, if I can, keep silent for the rest of today. Like I'm going to manage that! She said she will ring if the swab comes back with anything nasty. Prognoses is that I'll be feeling better by Saturday and back on my feet by Monday.

So another day on the settee being waited on hand and foot. At least it is good practice for all the resting I'm going to have to do post transplant.

Talking of which, I see that Holby City managed to compound it's disastrous portrayal to transplantation by prolonging the event in it's latest episode.

This time the mother of the donor came face to face with the recipient. After all the fuss this has created you'd have thought they'd have altered or even pulled this week's effort. Although it ended up with the mother of the donor deciding it had all been for the best in the end, the damage has been done.

On the plus side, figures released yesterday shows a 6% increase in transplants over the last twelve months. That means four thousand people received their new organs thanks to the generosity of donors and their families. However, although brilliant news, three people a day still die waiting for their chance of a new life and almost ten thousand are on the transplant list, hoping and praying they will be given the ultimate gift. Please do not be taken in by silly fictional drama's and, if you haven't already, sign the list today.

It Was 30 Years Ago Today.

Yes the big day has arrived and Peter and I have reached the big thirty. I cannot believe it, where the hell did all that time go? We got married at St Michael's Church, Aberystwyth on a glorious summers day to the sound of seagulls and the sea.

So what was his big surprise that I was so excited about, well a bottle of thirty year matured single malt whiskey. It is really difficult buying anything on my own now as I always need someone with me so I got this off the Internet direct from the distillery. I was so excited I presented him with it at breakfast. He was delighted but deemed 0730 just a little too early for a tasting.


Last night we were sat in the garden at midnight watching the fabulous display of meteors as the Perseids pass overhead. Luckily we had clear skies for once and we loved every minute of the twenty minutes we stayed to watch. However I was tired from a long day and gave up after that, Peter didn't want to sit out on his own so came in too.

Although shattered I had a very disturbed night and I've no idea why. I should have gone off like a baby but instead I just lay there staring at the ceiling and wondering why I was suddenly so awake. After a couple of trips to the loo I finally managed to slip into a doze, only to be woken up early by Andrew's alarm clock.

Breakfast was a cup of tea as I'm saving myself for our special lunch out . We were going to go out in the evening but as we are both working tomorrow decided it was too much of a risk and having to rush home, so I got enough sleep, would just ruin things. With lunch we can still enjoy ourselves and indulge without worrying about overdoing it as we have plenty of time to recover.


Andrew came on a flying visit yesterday, as he had a day off, and excitedly told us about all the jobs he'd had to do. Sadly his cardiac arrest didn't make it and die shortly after arriving at hospital but Andrew got special praise for keeping him going as long as he did. We are not going to see a lot of him over the next fortnight as he has lots of shifts lined up. Then he's back for ten days before uni starts up again and we'll be required to act as removal men and get him shifted from the room he's in now to the house he's renting with his mates for year two. We are fervently hoping it will be the last move we have to do this year.

I spoke to Laurence and have arranged for him to come down for lunch next Sunday, with a bit of luck Andrew will be free so all four of us can get together for a day, a rare event at the moment.

Looking back at our wedding photo's I look at two innocents who had no idea what fate had lined up for them. I'm pretty sure Peter wasn't banking on having to turn carer and seeing all out plans for retirement go down the drain. However we've stuck together through some very, very tough times and come out the other end. Sometimes I have a lot to be grateful for.

Kicking Back With The Kitties.

Well yesterday went surprisingly quickly considering how little I did. Mostly I sat on the settee with the cats, one on my lap and one curled up against my leg, and watched some DVD's while demolishing a bag of cherries. The rest has done me the world of good though and I feel much better than of late. So I intend to continue the good work today, though I do have to iron my work uniform at some point.

Today I am going to be having a go with my new gadget though, so that will add a bit of excitement to the day. I'm making a quiche for lunch so will use it to chop the onion, slice the mushrooms and grate the cheese. Then later on I'm making up a feta cheese salad for lunch tomorrow and will be using it to grate carrot, slice cucumber, shred lettuce and dice peppers, so it is going to get a good test. I'll report back on that on Tuesday.

As I've said before Tuesday is our thirtieth wedding anniversary so we've both taken the day off to spend together. The only thing we've planned is a long leisurely pub lunch and a kick back with a glass of wine and a good film in the evening. We are both back in work the next day so can't go overboard and have the whole bottle. If the weather is nice we'll go out and about with our camera's, if it's bad we'll kick back in front of the TV or, if in the mood, play a board game. Though to be honest I think after a heavy lunch we'll probably end up snoozing on the sofa like a couple of old pensioners.

Arrrggghhh! If only I was well, then we'd have taken a week off and gone to Rome but I'm grounded so this is the best we can manage for now.

Peter's present arrived safe and sound and is now hiding in Andrew's room, I'm so excited as I know he is going to love it to bits. All I've got to do now is try and find a time when he's out so I can wrap the thing.

Once again I am typing this under extremely difficult circumstances. Smirnoff has decided that the only place to sleep this morning is my desk, again. I've tried turfing him off but his paws seem to be spring loaded and he's back before he even touches the ground. After a lot of experimentation he finally found a way to fit on but he looks far from comfortable. Silly cat!

I had the misfortune to watch the new puppet show thing on the BBC last night. I can't recall the name but that's probably because it was so awful I didn't feel the need to remember it. What a waste of the ten minutes I stuck with it. There seemed to be a lot of noise, colour that hurt your eyes and not a lot else. I know I sound old but I really long for programmes like The Morecombe and Wise Show, the Generation Game or Only Fools and Horses. All made me rock with laughter and there was never any coarseness to it. Now it seems it's only funny when you swear or violence is involved. So sad.

I got a text from Andrew who seems to be enjoying his current placement. So far the highlights seem to be canulating a patient in the back of a moving ambulance and getting it in first time. Dealing with a woman cover head to foot in vomit, not all of it hers, and he's finally dealt with his first heart attack victim and had to do chest compressions. Now all that may not sound that exciting to you but when you've got a list of things you have to get signed off to pass the year they are very important mile stones. Well two of them are, I don't suppose he has to get dealing with women covered in vomit signed off as an essential part of training.

I'm so pleased for him as getting a heart attack patient is much rarer that you might think and it was one of the absolute musts as he could get loads of things signed off at once. Otherwise it is piecemeal and you can't guarantee getting all the elements you need to pass. No doubt I'll be getting the whole story blow by blow when I see him briefly on Wednesday.

No news from Laurence but then I usually only hear from him on Sundays so I'm expecting a call this evening. He has a couple of weeks off now and I'm hoping we can get together and have a meal or something, hopefully next weekend when both Peter and I are off.

Well that's it for now. I'll report back on my gadget and finally tell you what Peter's present is on Tuesday.