Random Jottings Of Gildersleeve

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Perhaps you'll learn more about me as you read my blog. For anyone who translates my blog using the translator facility, don't forget if you wish to read the comments in your own language to click on the title of the post down the left hand side otherwise they will remain in english. Also I assume that the translation is accurate but I don't know, so please allow for errors.

Monday, March 31, 2008

How Did That Happen?

I rarely phone anyone. I don't know that many people and therefore the mobile phone I own is very basic. No singing, all dancing with flashing lights etc...It's purely for booking a taxi home from the Supermarket and emergencies. Pay as you go. Any money on it lasts ages but I do top up from time to time. I thought it had been quite some time since I had added anything to my account on Saturday so I thought...I'll add £10. I tend to restrict myself around that amount, no higher than £20.

It allows for me wanting to phone from bed or if find myself in hospital or wherever. I use the fixed line to get on the net(otherwise I leave that line for Mum to talk to friends and family)and I don't add to her line rental and call costs.

So I've just checked the balance for my mobile...

Guess how much I am in credit?

£37

Good grief!

That will last so long I'll probably still be in credit next year.

Sunday, March 30, 2008

I Can't Get Started...

Yesterday, I had to go out and paid the price regarding my recent problem and boy was I uncomfortable. I spent most of the time trying to keep everything in place. I now discover that exercise(such as walking around)moves fluid away from the ankles and moves it around the body and that means it collects in the groin. And I should probably have been doing the opposite of what I was doing trying to get things back to where they are meant to be(but actually adding to the pressure already there)and nipping into the toilets at the supermarket and weeing it off. Not doing so it was just building up. I know for the future.

As I've said before, I have to be careful not to draw attention to myself and have someone think I'm a pervert. At least I can explain the situation away. I can manage if something doesn't get nipped otherwise I really have to act fast. An earlier post I mention possible complications regarding if I am operated on another forum member says she's had two and been private and all worked out fine and deending on where it it's located decides if they are painful.

Today has been a bit better apart from Lunchtime where nothing seemed to help and I thought "It's time to panic" Pain and no way to fix matters.

Since then, it's been reasonable but it helps in that all I have been doing is laying on my bed and falling asleep(and sometimes missing some radio I wanted to hear)

Its a lazy day...so little to blog about.

The most exciting part of the weekend? I've bought some side plates, to add to the other items I purchased a few weeks ago. I was torn whether to buy blue or a cream colour(and how many)I decided on 4 and went for the light blue. Don't know why I settle on that number as I suspect most would choose half a dozen. And again, they are good and solid but only cost £1 per plate so I'm happy and it means we are not short on plates. Later, I may if any are left buy some of the cream one's too. Or am I being extravagant?

Isn't it great to pleased by such simple things?

At least I haven't lost my appetite as yet. Maybe I'm eating too much but I do not seem to be adding weight.

What have I had today?

4 slices of toast and marmalade, porridge and a bacon sandwich.

1 Banana.

A potato waffle, bacon and a fried egg.

A chicken breast in white wine/mushroom sauce with some broccoli, carrots, peas and cauliflower and a couple of roast potatoes.

A Muller Apple Rice Pot.

And I've drank mainly water, 1 coffee and tonight I'll probably have a mug of tea.

So I hope that's a reasonable choice of food for today. You know how desperate I am when I start to list what I am eating on a blog entry.

Saturday, March 29, 2008

The Local Freesheet Pops Through The Door...

How things change over a couple of weeks...

I discovered(as mentioned previously)our local MP made what was publicised as quite a big speech in Parliament(I first read it online)then in the local press but decided it was a history lesson of the area. It tied in with a progress report as to the poor retail and social situation this town finds itself.

For a variety of reasons but I'd suggest mainly due to the area remaining true to it's political roots, the local scene hasn't changed, it is is a Labour stronghold. The political landscape stays the same and the local voter tends to say "Better the Devil you know!" Even if they are becoming unhappy with the direction the party is going. That's why when the last election took place, it was a breath of fresh air to see a bit more fight in this town where candidates were saying things haven't been good for decades and it's time to do something about it.

Local politicians that had been involved on the Borough Council for decades also discovered a backlash against the spin we were were being given and it resulted in the main parties realising that just maybe it was not going to be straight forward to assume that they would automatically be this town's MP.

I'm sure that panic set in having seen the local council election fail. So fighting for the retail area became a major strand of the campaign in the by election for electing a National representative for Parliament and our town became the focus of the media but with our Prime Minister no longer standing for the post, interest was scant. I do wonder if other adjoining areas felt neglected by the priority given to this town.

How many letters in a newspaper are representative of how people feel on a debate is difficult because we'll all be biased in our opinions and you have to be motivated to contact the media but the response to the speech given in Parliament is less than complimentary and letters in the new free sheet raise concerns. Personally I like to believe that I'll praise or criticise any party and come at a political story without preconceived ideas.

We also have had the debate in the House of Commons and vote to close many, many Post Offices across the UK but then as has happened in quite a few locations, the same MP's have promised to fight to keep branches open within their own constituencies. Some newspapers have sighted times where you could suggest an MP is saying one thing and doing something else.

The same free sheet features an on town Post Office fighting for its life and it will be interesting to see what the outcome will be but I wouldn't hold my breath. It is away from the main retail area and is next to a handful of shops that serves a population of a decent size and allows the locals to have fish and chips, sweets, newspapers, hairdressers and the PO is also a general dealer so you can get those little things you always run out of and it's near to a sheltered accommodation/residential home making it easy for elderly to pick up their pensions without traveling far and having to pay for a taxi or attempt to use public transport.

The truth is I think, branches will close, and the vote was going to succeed but if any can be saved its as an after thought and to remain open, it's down to luck and another will take it's place.

We are hearing all kinds of promises as to what may happen regarding the next phase of the retail area, which shops may move in and take over the empty retail units, the completion of the demolition of what remains of the old part of the town which includes a dilapidated library, health centre and completion of the development but again if all the councils are being wound up and business is being transferred to a larger Councils across the UK, who is going to hurry things along and see everything neatly finished off? Why bother? I've said this before(sorry to repeat myself)but there will be a procedure that has to be followed. I suspect what is on the minds of local officials is standing and hoping to be elected again.

The same paper reports that the local library as an example is to be moved temporally before being given a permanent home later on and for this move it is going to cost a reported approx of £350,000.

It is not a big library so the cost I think will surprise quite a few people. I'm tempted to say if practical, close it and wait until the new building can be built. Perhaps that is not a viable solution. Its not ideal but with a library ticket you can use any of the other libraries across the county.

Newton News With this link you can read the letters to match this blog entry. If the web page is updated look for letters archived to March 27th 2008.

Friday, March 28, 2008

I've All But Resigned Myself To Have The Operation...

took the plunge and looked up what it entails...Yuk!

Relatively simple it appears(if you have nothing else wrong with you)and it's said that 100,000 people have such an operation every year in the UK and it's such a common procedure. And rarely, comes back once fixed. So at least it's successful.

It would appear the average waiting list on our National Health Service is 26 weeks or I can go private and it looks as though we're talking of a price tag of around £4,000 and I assume it can be done much quicker. This option would mean going to a hospital out of the area. I assume if I use the NHS it will be more local.

It appears they try to get you home as quick as possible after the operation and as long as you don't live alone you can be home the same day all being well.

I could put off but the article on the NHS website says that once you have a hernia, they get worse so are best dealt with as soon as possible. They also warn against them turning into strangulated hernia's which can result in having a bad time or the need of emergency surgery. Thankfully, most of the time its not been painful but when it is it's just like someone getting what feels like a red hot poker and putting it into your groin and there is no way you can ignore the pain.

Fortunately, if that happens so far I can by laying on the bed move it into a comfortable position again(so far)often by moving my leg around but I assume that pain is the start of what could be a strangulated hernia if left unattended. And given the choice of letting things deteriorate or messing about for years I'd rather be put right whilst I am still reasonably young.

But you don't know until it decides it's going to move suddenly how it will be. If it stays put...great, if it moves how much of a nuisance it will be and what may trigger it off. It could be be simply leaning forward. I'm working on the trying to avoid provoking it suddenly happening by avoiding adding weight, eating smaller portions and trying to keep water retention down to ease pressure in that area.

As for laying on my bed and taking it easy, I have no problem with that.

I'm probably more concerned about whether I'll be offered keyhole surgery which is said to have less pain and fewer scars and whether I am likely to catch a Hospital infection. As to whether I am offered keyhole it appears to depend on whether the Consultant chosen has operated using the procedure for a limited quota of 20 times. If I have read the information correctly it seems that these operations take around 50 minutes on average and in many cases they are done under local anaesthetic rather than general so maybe that will take some of the strain off the system regarding my other condition and may be safer.

Just have to decide when to go and see my Dr and start the ball rolling...It's just a bit annoying that when you've had other health issues this has to happen on top of it all.

Thursday, March 27, 2008

What A Day...

Up and about already...eaten Breakfast, shaved and...oh yes...rearranged my hernia.

Back to bed for a couple of hours to rest before attending the Hospital for an update and hope other matters are improving...

I think the steroids are continuing to affect my appearance now, that and the illness anyhow such as my face becoming larger and moon like and oh, yes, puffy bags under the eyes. But I'll not be going under the knife to have them fixed. Rightly or wrongly I remember a story in the newspapers from decades ago involving Billy Smart Jr. who ran the successful Smarts Circus across the UK and Europe having an operation to remove eye bags(that's what was reported)and the operation went wrong and he lost the sight in one eye. I get more than a bit squeamish if anything involves messing around with the eyes.

Even, if at a future date I see to my other problem. I'll wear dark glasses and swan around like a celebrity :-)

Back to give the news, good or bad later(I hope that the news will be that treatment continues to sustain matters)and time wise, that's a long way down the line.

Update:Back from the Hospital... Hernia took some fixing(rolling around on the floor of the disabled toilet to get things back where they should be)

OK for now...I may have a hopeful solution for this... I've been told to take two water tablets together each morning so if that means I get rid of the excess fluid quickly, the pressure will be reduced(and just maybe this will improve)I haven't mentioned this to any medical staff as yet as I am waiting to see if this idea stops the problem.

Then maybe I could live with it or it may improve.

I was told not to read anything into the colour of the blood. It could be the medication.

The treatment is still working. I have to return in a fortnight where they'll decide whether I should start to reduce the steroids or continue taking the same amount. Blood pressure was fine. So all in all better than expected.

I mentioned the high cholesterol reading when at the hospital and was told they'll worry about that if it remains after a year or so but as it could be related to the medicine and current problems I was told not to worry and that I should, seeing I have not had any heart problems forget about it for now and ignore the likelihood that I am going to have a heart attack.

If it was to continue they'll give me tablets... Well as my heart and arteries are sound I don't want to find that becoming a problem.

Speaking of which I collected my prescription and getting home discovered that they've only given me enough steroids to last me about 8 days so I've had to order extra but luckily they've allowed my request by phone which they normally refuse to do)They have me only taking 10mg daily(and I am taking 60mg) But it means another trip to the shops and a taxi fare I could've avoided...good job I checked otherwise I'd have found myself suddenly caught short.

Once again, though the Consultant advises whom I see and they discuss matters between them, again, he did not come in to talk to me and left it to his registrar to deal with my treatment. It seems a new idea now that his appointments are shared with others form his department that he works with rather than him doing every appointment. So maybe its a way of seeing more patients or sharing out the work load. He does seem happy with my continued progress though.

So unless something unexpected happens, my plan is to have lots of lazy days and down time dozing or whatever. And hopefully stop going on about my woes. The next appointment is officially on April 10th where a decision may be made to try and reduce the amount of steroids I take daily but that has to be done gradually, if at all.

Tuesday, March 25, 2008

That Looks Like Strawberry Syrup...

I've mentioned this on a message board I frequent but as I seem to be talking about medical matters on my blog I guess I have to here.

I had my bloods taken today at the Dr's surgery and the nurse who took them usually makes no comment, today she mentioned how light it looked and compared the samples to looking like Strawberry syrup. You don't know what blood is like until the sample has been checked by the Hospital Laboratory but it's usually dark in colour.

I guess that means something isn't right but is it bad news or that the drugs are working and this is how my blood is whilst they do their magic?

Either way, I'm going to be wondering what I am going to be told in the next 48 hours when I see my Consultant.

My hernia problem has given cause for concern...in one way I've found an easier way to move things back into place and not cause as much soreness, on the other hand today it caused discomfort and alarm which I could not avoid. And I was happy to get back home. I plan to stay here until going to hospital for my check up.

The problem having been caused by the old standby of water retention gathering in the groin area and therefore increasing pressure and so the hernia increased in size and there was nowhere to move it back into a suitable position but upon getting home, things did improve as I passed water, pressure reduced and that allowed the problem to reduce and it's continued that way since over a long period of hours involving rest and propping myself up to drain it away. What a relief.

I keep hoping that just maybe if one problem improves the rest will follow.

The feet, ankles and lower legs still have more fluid than they should but I can report that the new trainers and trainer socks have made things much more comfortable(How naive, I did not know that trainer socks existed)but they do not grip and leave marks in the ankle. Heaven. 3 pairs for £1...even better.

I suspect that the water gathering in the groin area is fluid moving from the lower legs and exercise circulates it around the body otherwise it stays in a specific area, as I walked around I found my trainers were less tight. And offered more room.

So for all those who convinced me that buying trainers was a good idea and to get around the problem of not being able to wear my normal shoes...thank you. I guess it's been decades since I owned a pair of trainers. Not since I was at school doing PE and probably wearing the traditional plimsoll type footwear that was not fashionable or designer like. I certainly would not have been seen wearing them to go shopping or whatever.

I may very well, find myself doing so from now on.

Update:I mentioned the bloods elsewhere and it's been suggested I could be Anemic. Now this may mean something else to fix or could be an underlying factor because of an autoimmune disorder attacking my body which hopefully the drugs will correct or maybe they are damping the system down so causing it.

It's perhaps not good guessing and reading more into something than you should and in general avoid doing so but I did find the following article...

Sunday, March 23, 2008

I Said That I Would...And I Have

I'm not sure that we have a complete set of cutlery or dinner service. Does anyone these days? How many of us entertain and have dinner parties? I'm not sure that I have ever attended a formal dinner party in a home or thrown one.

Well, there are only two of us and as long as we are able to find a plate, a bowl, cup or mug to put food on, that's all that matters. You would not believe how difficult it is to buy cups and saucers separate and not in a set unless you are able to get to a departmental or specialist store in a larger town or city.

There are some beautiful but un-necessarily expensive items you can buy but hey, over the last few months so many have been broken, is there any point buying them? Sometimes, plain simple white porcelain takes some beating.



I'm happy with these grey coloured cereal bowls I managed to find and can be used for a variety of foods, they are reasonably priced and the design is good and solid.

But I have to admit to liking a fine bone china mug as opposed to a big chunky mug. The plain mugs seem to be no longer being bought in by Tesco's so I suspect the mug with the scroll work will the next to be no longer available. So I may have to get a duplicate in case of accidents.

There's Been Some Bad Weather Of Late...

Some have tried to tie it into Global Warming and some areas of the world and the UK here have had some spectacular images reported and sent in by readers of various newspapers.

Easter weekend has been revisited by a cold snap and many areas have been hit with snow showers. I cannot say that I saw any myself(but I was told that we'd had a few during Easter Saturday)by my Mum who had to go out and well, one happened whilst she was.

I was oblivious to the event being indoors.



However, I just happened to be around at 2.30am on Easter Sunday and looking out of my bedroom window and saw gentle snow falling from the sky, tried taking a photo and managed the following image of my garden.

It doesn't seem too cold to me so I'm not expecting it to lay for long or to be too bad upon waking. But we'll see. As for the photo, it's not come out too bad...

They are making a big thing of the fact the weather has turned for Easter but I seem to remember it happens in March most years and...this particular year of 2008 for some reason whoever decides when Easter is to be, they've decided on a very early time to hold it.

The next one to be set around this date will not happen for around another 200 years so I'm not sure it's so remarkable that the bad weather coincides this time and I cannot see me being around for the next one. It's a big topic for discussion(Perhaps at a future time again)whether Global warming is playing it's part but experts suggest it's a natural cycle and recent events are not connected. There is also a body of experts now being more sensible and less alarmist in how they release their information, the latest campaign suggests adapting to future trends which they say would work much better socially, environmentally and economically for the population of the world as a whole.

Explanation Of Easter Dates

Saturday, March 22, 2008

10,000 Tracks And Counting...

It's taken some doing but you see all these CD's?


There are approx 10,000 tracks here. My music Library. I would love to own as many as possible. And plan to keep on adding to my collection. Only now they are on my PC and backed up on 10 DVD's in case the hard drive fails. I still like to own an original CD and often can say that it's cheaper to buy a CD now than download tracks from the net unless they are free but it's amazing to think all these can fit onto a lot less space. I cannot tell any difference in the quality(mp3)and it's great being able to play a track within seconds and not have to keep changing the CD or set the computer away and have it play a random selection.

Fantastic!

Friday, March 21, 2008

New Shoes...

Well, having talked about my new footware I'll post some images of what I managed to get for my money.



And though I should get around to tidying up my bedroom(and I will one day)Here's where it all happens. Computers, hard drives, phone, Digital radio receiver and recorder. I've some refuse sacks to go through but for now I've draped a blanket over them so they don't look too bad and you can just to say see on my bed some pillows for propping myself up in bed. I'll get sorted out in time...I hope to get a proper works station at a future date. It's not rubbish but paperwork to go through and decide what needs keeping or can be got rid of.

I may post images of my cereal bowls and mugs too...fantastic!


Now isn't this one of the most interesting posts you've ever read on a blog? Don't answer that ;-)

I Love A Cooked Breakfast But...

being in bed most of the morning, I rarely have one...but of late I do manage to eat very well.

And hopefully will continue to do so.

I have some toast and marmalade put up the night before to eat with my pills when I wake(but usually that is eaten in the night)so I make more if I'm up and about(so I guess that works out at at around four slices)

A banana.

A bowl of porridge.

And again, this morning I had a toasted muffin with some raspberry jam.

The other day, I risked a...bacon roll.

Of course I probably won't eat much for Lunch and that will tend to be after 1pm anyhow.

Its said that Breakfast is the most important meal of the day...hence the name Breakfast...you are breaking the fast. And if I eat a little less during the day I know I have not lost my appetite.

In general I believe in eating when you feel like it and probably small portions, often...but not at set times.

Thursday, March 20, 2008

Rough Day...

The weather deteriorating and said to be a poor weekend of snow and who knows what for Easter(this, starting today which is officially the start of Spring)but we'll have to wait to see if this is an accurate forecast.

I had to go out though I did not wish to(I had some Easter cards to mail)but missed the collection and with no mail collection much over the weekend due to Good Friday and Easter Monday...I've given up.

My hernia decided to give me a lot of problems today and if it continues as today, I'm having myself fixed(even if I have to do so privately and use my small savings)but again I'm hoping it will settle down. Since coming home, it seems to have but you trying to put things where it should be sometimes makes it more sore than it needs to be. Equally, has anyone tried to discreetly rearrange themselves and try to get comfortable without drawing attention to what is a very personal thing and may look strange if someone is watching?

On the other hand, I managed to find some trainers(ok they're not designer branded)and are Tesco's own but they are pretty smart to me and though laced through going to a larger size, I can get them on my feet and are comfortable, I also purchased a pair of mule slippers and some trainer socks which if I find grip I will make a small cut in the band to keep them slack.

I'm happy with them anyhow.

Also, because of the price...£10 for the trainers, £4 for the slippers and £1 for the socks but they also had 20% discount so all I paid was approx £12. So how could I be robbed?

So I bagged myself a bargain.

The plan is assuming nothing goes wrong for the next few days is to stay indoors and do as little as possible and rest. My taxis are already booked for my tests and hospital appointment for next week. I hope this means that there will be little if anything bad to report on here and therefore if I am missing it's not due to something unforeseen.

Wednesday, March 19, 2008

The Latest Report...

Another day and well, I guess I just continue to go through the symptoms and treatment. Is it working? I hope so. My body seems remarkably tolerant to the strong drugs that I am taking.

Am I tired? I sleep or rest whenever I wish to so I can relax before I becoming tired or do so when I feel the need to. If I am unable to sleep through the night, I know I am able to at any time that I decide.

I still prop myself up in bed. It has enabled me to drain water that gathers in my legs. The worst area being the feet and ankles. They can really increase in size. I had to go out yesterday...I didn't want to but was as quick as I possibly could be and what a job to try and get a pair of shoes I could put my feet in.

Tight doesn't come into it. I thought that I may have to give up. Perhaps I need to find some shoes that lace up, I tend to use slip ons. Or a pair of cheap trainers, they'll not match anything I wear but may allow me some comfort. My feet really do swell especially in the afternoon/early evenings. And movement feels tight and uncomfortable if you have to try and bend your ankles/legs when walking or going up and downstairs. Then it really is worth a lay down to drain excess liquid away. I'm trying to manage on one water tablet as prescribed but maybe concede to taking that extra one to help matters. Of course the feet may have changed due to the steroids as well.

This is a bit gross.

I know that I have a hernia but I have come to the conclusion that where the water collects in the groin is creating pressure and pushing certain parts into a different position and as it is "weed" off hopefully my insides move back into the correct position again, so more reasons to lose the liquid. If that happens, it could mean I can manage that aspect.

It also would do no harm to try(and this is difficult when steroids add to your weight)especially around the stomach area to try and stop the stomach becoming over stretched again as the less you stretch it, the stronger it is at keeping everything in the correct place.

The treatment if it works will take ages to do it's job and even if it does and I am fortunate to come off it again, I will need regular check ups and could need to return to it at very short notice. And I have to be in the position that I can do as I wish any day as every day is different and I can feel different across any 24 hour period.

Before I returned to this treatment I found times I felt tired and you have to rest and getting around takes so much effort, you have to lay down and rest to get some energy back.

Mentally, I remain upbeat and positive.

I heard the other day on the BBC World Service a health story that explains how the Immune system can in trying to repair a problem actually attacks parts of the body and does harm unintentionally whilst thinking it's doing the correct thing. It now appears that certain proteins are created and if the scientist can interfere with that aspect, just maybe they could come up with newer, safer drugs to halt or decrease such problems. As these proteins latch onto healthy cells and kill them. So at least some research is going on to find a cure.

The Immune system can in theory decide to attack various parts of the body, in my case it's the kidneys but it could equally be the heart, liver or whatever else.

I don't know if it will make a difference but I have gone back to eating porridge today as an alternative to some of my breakfast fare as it's said to reduce cholesterol and as my levels have shot up suddenly, I thought just maybe I can reduce it naturally. We'll see.

Unless my diet is restricted I am continuing to try and eat all the foods I hope will keep me healthy, lots of fruit and veg and as I have to eat some protein, I keep to lean meat in Small portions like chicken or fish.

I have discovered that I can drink a bit more liquid if I do so through the night rather than during the day and early evening.

Friday, March 14, 2008

Our MP Speaks At Last About The Town's Problems...

And in Parliament...Not sure why but at least it has happened, it would appear to be nothing more than a potted lecture of some of the town's history and where we are are. Not much in the way of what happens next as proposals have been known for some years.

What is not addressed by giving a progress report and history of how we are where we are is the fact that the councils across the UK are being closed down and merged so they will become larger and in doing so(in theory)we are starting with a clean slate and the errors and shortfall of previous Government bodies will be lost.

Also, this area has continually supported and voted in the same political party and officials on a local and national level therefore just who is responsible for the regeneration of the town and the fact that it has taken decades to get to the point the town finds itself? And more importantly why?

Considering that the previous Minister was one of the UK histories most important and media savvy personalities of the 20th Century and probably could've used his considerable knowledge of the media to the advantage of the town...I await to see if and when anything happens from the speech.

With all the changes that are happening with the mechanisms of government and officials as things are wound up, I want to be proven wrong but I think we'll still be waiting for some years to come. I hope that I am around to see it in my lifetime.

Parliamentary Speech

Thursday, March 13, 2008

Government Spin May Affect The Vulnerable...

Hopefully progress continues(and of course I'd rather be fit and well and capable of a long life)but the condition is chronic and obviously work is likely to be affected.
I mean, if I am having to lie down and drain water retention off which takes hours. What am I going to do?

I just have to stand too long/sit too long and water collects.

I have talked with some people with similar problems that suggest reduced kidney function so all the time you are attempting to avoid further deterioration.

So our new Government Minister in his budget announces that all long term sick and vulnerable claimants will have to attend some kind of assessment to get them into work.

Of course in an ideal world mental and physical fulfillment is important but as many charities who deal with those who are sick are afraid that as many private companies are being brought in and Government appointed medical staff to oversee these schemes many genuine cases will be mishandled and people will see themselves suffering with stress and entitlements reduced/removed altogether. The problem being that those who really know their patients will be ignored.

You would think that an expert Consultant and your own Dr to be far more believe able than someone who you are ordered to see.

But this is all in the future(timescale of 18-24 months)I understand that the year 2010 has been flagged up. As for myself, I will worry about that as and when I am called up and the details are known in greater detail. And whether some appointed official with some procedure tells me I am fit, if I feel otherwise I am not going to knock myself up just so I tick boxes to gain a company or official a bonus. I get one chance of survival and have to do what is right for me.

Charities and volunteer organisations that watch out for the disadvantaged are unhappy with the proposals and I am more likely to believe what they say. But all the major political parties have similar ideas and plans and are singing from the same hymn sheet so what these pressure groups can do may be limited. It's not helped by some of the biased and poorly orchestrated campaigns that are broadcast on radio and tv or in the press. Often in ignorance of what it is like for many having problems. Usually, because everyone can sight an anecdotal instance where someone has fiddled the system.

How am I?

Well, again, I cannot say, that depends on whether the treatment continues to work, side effects of what is a strong drug regime and other variables.

The other night I found(though I had spent ages propped up)I actually was able to take in more liquid than previously and reduce my oedema.

Tonight, the opposite being true. The legs/feet really were bloated. It only took a short time of sitting or standing so again, what can you do if most jobs require standing/sitting? After all, retention of water adds to weight and blood pressure.

Too many of these schemes and ideas are thought up by people who have absolutely no knowledge of illness and the situation that many who live such lives and in many cases everything has gone smoothly for them. I've been checked on and monitored for ten years to date. Does all of this not account for anything? All the information is there for them to access as you have to give Government bodies access to your medical records and Dr's.

Even, if treatment works, with the amount of damage the drugs can cause in other ways, they can create problems. Over time you have to be reduced or removed from treatment and cannot just come off the treatment immediately. It has to happen gradually and you may have to go back onto it again(assuming it works)

It is also keeping me indoors for most of the time...physically I have to restrict how much I do mobility wise but I could imagine someone saying, if you can go out and do some tasks you are well enough to do much more but more than ever it's important to say that no one population wise really knows by looking at someone how ill they are, only the person concerned and the medical people who deal with them.

I have one further development I could've done without that may or may not require surgery, it appears that I have managed to acquire a hernia. For now, I have not seen about it or mentioned it to my Dr as it has just happened and to be honest I am more concerned with trying to improve the original condition which I see as more life threatening and important for my well being.

A couple of extra effects from the treatment are little spots in the mouth and some of my food tastes strange.

Update:It could be the drugs or an imbalance of chemicals in the body but I have once again(as happened years ago)found that one of my hands attempts to close, the nearest that I can describe it to being is cramp like and when it decides to do it, the only relief that seems to work is to get the hand into a sink of hot water for a minute or two. Years ago on a forum a consultant suggested that chemicals in the body were probably out of balance. As long as the water trick works, I can go with this symptom.

The water retention is still a problem especially if I stand or sit for not a very long time as gravity takes it into the ankles and feet in particular so sitting here on my nice new chair though better for my computer work, I only use it for a short amount of time because I know what is going to happen. So it's back to bed and propping the old legs up again. That does at least get rid of the excess fluid but obviously like filtering water you are waiting for the liquid to work it's way through the skin tissue so you can "wee" it away.


Lips are a bit sore, tongue feels a bit tingly depending on the food or drink taken and sometimes the throat can feel a bit sore/voice gets a bit weak. All this varies from day to day.

Still, 23 days of treatment under my belt and we'll see how things go...Easter break has meant that my next blood test at the Dr's surgery is delayed by a day but results will hopefully be ready for the Consultant a couple of days later, it's handy as I go into the appointment with results rather than having to do so after seeing the Consultant but I cannot take the test any earlier as he likes the readings as close to the day I see him which is approx 14 days away.

Fingers and toes are crossed.

Saturday, March 08, 2008

Ten Days On...

A progress report...

As much water retention as before(perhaps more, as today I had an extra tablet to take that required more liquid intake on a Saturday)Yet weight gain is minimal(for now)but Steroids will kick in and add some weight yet. Put it this way I have not drunk since 8am and still am draining fluid away. Yuk!

And the amount of liquid drunk equates to approx 3/4 of a litre. And it was suggested that I drink to avoid thirst but probably a litre of water is the allowed amount at present. Of course it is forgotten that many foods(Fruit and Vegetable)are cooked or contain liquid naturally so that also gets converted into moisture so it all adds up even if you restrict what you drink.

It was suggested that I can dispose of propping myself up in bed(to avoid it collecting in the groin area)but if I sit or stand, it does that anyhow and it does not seem to like going into my legs anymore, it collects in the groin. But today, I am propping myself up to get rid of it more quickly and to get rid of more so that it's not such a problem through the night. That way I may get a better sleep.

Maybe this is temporary or a symptom I have to go through for now or will always have, It's too early to say.

My legs are a bit more stocky especially in the ankle area but pressing the legs does not show too much water, if any, between the skin tissue.

Two weeks into treatment and the readings are starting to go in the right direction(ever so slightly)That's Protein and Createnine. The Consultant was very happy when I saw him on Thursday. I return for another check up in three weeks(hoping the progress continues to improve)It will be a long haul and some medicine can take a couple of months to kick in and then it will have to be monitored and amounts changed.

Some tablets, if the last time are anything to go by, I'll be on for months/years and you cannot just come off them immediately.

So the next time I write on my blog, Let's hope I can talk of other things...at least until practically the end of March...