Not A Good Day!!

I woke up this morning feeling really under the weather. I felt like I was bunged up with a cold, runny nose, sore throat, coughing up loads of lovely matter that no one should have to look at YUCK!!!. I had an appointment as you know at the PUVA department so to speak before going to listen to the latest musings of Merlin. I really didn’t feel up to going for PUVA so I phoned up and explained how I was feeling and cancelled for today. Hopefully I will be able to make it either Wednesday or Friday I have to ring them to re arrange. I did however keep the appointment with the Wizard as I was hoping he could give me one off his special potions to cure this latest ailment. He was obviously pleased to see me as always although I think he soon wasn’t when I mentioned that I was pretty bad at the moment as in not just the skin thing but the recent start of coughing up that nasty stuff and runny nose etc… I did tell him that at least my temperature is still normal so I have no fever as such. He did the usual thing of informing me that if it does go up I have to come in straight away which I know anyhow but I guess he wouldn’t be doing his job if he didn’t tell me. He’s increased the dosage on some of my medications and also added in another anti biotic to deal with this latest cough etc which hopefully will do the trick. The swine decided to punish me then by sending me for a Chest X-ray which meant having to wait around for a porter to take me there as there is no way I would have made it there alive in my state. Then when that was done I had to walk the some 100 yards back to the Pharmacy department for the drugs and then get them to phone for a porter to take me back to the car and when you have to wait at least ½ hour for each porter it becomes a real nightmare.

On top of all that I really feel down again today. A lot is to do with not feeling too well at the moment but I find when I start to get down all the negative feelings start to come back. Things like the lack of independence and the feelings of worthlessness etc suddenly become big issues. Also I find I become very emotional at times like this too and have sobbed most of the day too. I know I have joked in the past about it being my Little Sister’s fault by giving me here female genes but times like this I think there may be something truthful in that because I never used to be that I way at all. I think I will never really come to terms with the lack of independence as it is just part of me that won’t change but eventually I get forced into it by things out of my control. Judith always say’s to me to try and see it another way as in make the most of being SPOILT by being pushed around and not as negative. I know she is right in what she is saying but I’m just too blinking stubborn for my own good.

Some of my problems stem from when I was first diagnosed with Leukaemia, (do you know what I cant ever remember actually writing LEUKAEMIA at all in any of my blogs so far aint that weird??), well the prognosis I was given then if I went through with the Transplant from my sister was that I would be back to having a normal life again as in working and actually living again in 6-12 months. Well as you see here I am 2 1/2 years on and things in a lot of ways are actually worse not better. I must say that Judith has always said that it will take more like 5-6 years to be back to normal and she is a lot nearer in her estimation than anyone else I think. The thing is when you are that low and vulnerable so to speak you tend to cling on to anything positive that you can and to be honest a lot of people are like me and are brought up too think that the doctor knows best so what he says is truth so when they say that about the timescale thing I jumped on it thinking at least it is worth just giving up that much of my life then I can get back to normal etc. little did I know or the Medical Staff for that matter that I would end up with so many problems along the way and still today that to be frank I will never have what I used to call a normal life again and the only normal life possible for me now is full of compromises. I guess what I am trying to say is that my impression of normal before all this is nowhere near the same as my impression of normal now, also what I would have taken for granted before has become at times either impossible or a long term goal to achieve, things like walking more than 50 yards without getting out of puff and needing to sit down etc…

I guess the upshot of this is should the doctors actually tell you that. surely as this is actually not curable it is in fact for life as I know from first hand experience that even after 15 years in remission it can rear its ugly head again as a very good friend of mine Ron found out to his cost. God I really miss him at times still he was like a mentor to me and helped me all through my initial investiture into The Club Of The Baldies!!

I must admit all this negative stuff when I am having a good day, I see it as all positive and it actually spurs me to do more and try and push myself to get through this nut when like this last day or so I am not coping quite well it suddenly become all negative and bad and the worlds going to end etc… It is like I said to the lovely Cath who sucked my dry of my Red Goods at the clinic and also tortured me by squirting this horrible salty water up my hooter to get a sample, to which I repaid her by leaving her a lovely fresh sample of my infamous Slimy Green Chest Gooo, that “You Need Fight To Fight” and at the moment I am all out of fight that’s all. A short spell of self pity usually results in a new spark of enthusiastic self belief so keep watching this space for the new me appearing hopefully soon.

Till Then,

See Ya!!