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.