A busy week........but hospital free!

This week has flown by, just lately everyday seems the same, maybe its because I can't do so much at the moment. But I am not complaining, at least I can still get out of my bed, even though these days I look and feel more like Roly Poly. But hopefully my weight will stabilise now and I will start to lose a few pounds. Stupid steroids..but very necessary to help me breathe.

If you remember in my last post I mentioned that I had a rash due to my medication making me sensitive to the sun. Well for those of you who haven't noticed...the sun has gone and so has the rash! So maybe I should move to the cooler climate, and all will be well. In the future I will make sure that I put some high factor sun screen on then the rash should not be a problem.

I have had a really busy week this week. I was asked to appear in a DVD about people with Long Term Conditions. I am all for helping anyone with a LTC as it is sometimes very easy to get yourself into a downward spiral....I know as I have been there. So I appeared in the DVD. It was for the NHS to report the New Vision. There has been a lot of controversy about the Vision, but I believed strongly that the work would make a difference for patients like myself. I will let you all decide what you think of the video. If you click the link I am on another link "Launch in Vision 2". Then fast forward to LTC. I will put the link on, but not sure how to do this properly so please forgive me:
http://www.eoe.nhs.uk/page.php?page_id=77 ( think it might be wrong)
It was an interesting day, but very tiring. I really do enjoy talking about raising awareness etc.... and I met some very interesting people. Lady Archer was there and she was a lovely woman. Very genuine and friendly. I would like to have a job doing public speaking when I get my transplant( Notice I said when and not If ). I can remember the first time that I had to speak in public. I was terrified, but I really enjoy it now. I just stand and try to make sure that no one falls asleep before I am finished. If I see someone nearly dozing at the back,or waving a white hankerchief... then I know that I have rambled for to long, so I try to bring it to a close. I don't think that has happened just yet...but give it time! Bob came with me, usually I must admit that he seldom comes with me during my talks, as he finds it very hard. Most of the talks come straight from my heart and can be very emotional. As he has had to see me suffer from my disease, it gets very hard for him to see me discuss it to everyone. But I feel if it makes the world more aware then we must try everything that we can to make a difference.It also makes me feel useful....there is so much that I cannot do now, that it is always good to focus on things that I can. Bob has been my rock the last few years and I don't think I would have got on the list if it had not been for him and my family. I have not always been the nicest person to know when I am not well...but hopefully it will all be worthwhile in the end.

This week I have been hospital free,no appointments all week, must be a record! but it has been lovely and has given me some spare time. I have my support group on Monday, so had a few jobs to do before the meeting. I must admit that I have not been so active as Chairman the last few months, I have just not been well enough, but there is still a lot that I can do. We have a newsletter every quarter, so I got into action and decided to print the summer edition before Mondays meeting. This sounds easy....or so I thought, but it took me ages. Trying to find relevant articles for the Summer edition wasn't easy....but I love a challenge. Now I have finished and it will be at Mondays meeting to hand out to all our members. What a relief, at the rate I was going it would be next Summer that they would be looking at! This meeting we are having a pie and mash day, I am so pleased that I have not got to cook. 45 hungry people wanting their dinner....I pity the chef! Most of our members have COPD, and many of them are 55+ they are wonderful people with hearts of gold, and I have learnt so much since being with the group. It makes such a difference to chat to people who are going though similar circumstances as yourself. And I feel that I have them to thank for being so positive...I was such a negative person before I joined and would never be here now, if they hadn't changed my life around. So for anyone who has a illness, it really does help to have support.

This weekend I intend to get some rest....I am feeling really tired after my hectic week, and it will just be nice to chill out for a time, with Bob, family and friends. Sorry this post is so long it always takes me forever to get started,and then I am never able to stop! most of it is a load of rubbish, but as I said before it comes from the heart! Off to get my PJ's on now. Night Night x x

PS .....I want to say that I am thinking about everyone who has just had a transplant, I have been reading a few blogs about their experience since the operation and I feel that it is really helping. So a big thank you. I hope you all have a fulfilling life, and that the people that are still waiting, get their new organs soon! x x

NOT LONG NOW

My daughter Louise and granddaughters Cary's and Evie. I didn't have a nice photo when I included my family, but I love this one!


I am pleased to say that this month seems to be flying by....even though I would love to have it over with right now! But not long to go. I had my pre-assessment this week. I was terrified, some of my friends had already had an angiogram, yet had not had to attend hospital days before , so I was wondering why I had to.....but it was nothing to worry about. The reason for my pre-assessment was that I was having my angiogram first thing Tuesday morning, so they liked to get the tests done before, as there wouldn't be much time before, so tests over with.....bloods,ECG,blood pressure. So once again panic over and a waste of my energy getting worried. So if any of you have to go for pre-assessment then please do not panic!!! it's not as bad as it seems!
I have to be at the hospital at 8am on Tuesday. I am not worried as the test is done so many times,I am sure I am in capable hands. They are so good at Papworth. I have to stay all day...so my Bob will be pleased, he might get some peace. I might need new lungs, but if there are people on here that know me...you will all know that it will never stop me talking...ha ha. I always have a good excuse, I have to improve my lung function, and at 14% it needs improving.
I haven't really done much this week, apart from the pre-assessment. Just spending time with Bob, and seeing my grand-children. They are poorly at the moment. Sharlie has got Slap Face (no I didn't slap her, it is a virus) and Cary's has glandular fever. Fortunately I haven't caught it. Obviously my daughters wouldn't have let me have contact with them if they had known, but as you all know, sometimes that is not possible. But I am fine, so hopefully I will remain germ free, and it is always nice to spend time with my family. Bob's daughter Sue also came over, so we had a lovely time. I enjoy spending days with family, they are so important to me!
I had a busy day on Friday..I am in a DVD for the NHS, so they came to film me. I just had to say what I thought about long term conditions. It was brilliant. I love to put my illness to good use.And by being positive and showing people that you can be in control of your condition is a good way to start. So a busy few days, but I am not complaining! I just want to get this month over with, as then I hope I can concentrate on getting my transplant!
Until the next time!