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

IT AIN'T HALF 'OT MUM

I know that most people will be enjoying this hot weather...but I am really suffering at the moment. I am covered in a rash which apparently is caused by a sensitivity to the sun. Even though I have been sat in the shade. They think that my medications have caused it. I was aware that post transplant I will not be allowed to sit in the sun as the anti-rejection drugs will cause the same symptoms. So I had to get up at 5am today to have a cold shower as the rash was really itchy ,and then had to cover myself in a cortisone cream that the doctor gave me! So much for summer, I was looking forward to sitting under the parasol...hoping there might be some breeze to help my breathing, but not a chance now! I suppose I could always stick my head in the fridge or spend the entire day sat in my bedroom with the air con on! I have also been given a sun block, the pharmacist hasn't got it in yet, but hopefully that should do the trick.

My week hasn't been to good health wise, I am still coughing and even more breathless at the moment. I am on antibiotics, but its not really doing the trick... so I might have to go in for a few days next week for IV's. I have a port... so the access is easier than having to find a vein, my veins are non-existent so my port makes such a difference. I am hoping if I do have to be admitted they will let continue IV's at home. I am very lucky as I only live 20 minutes away from my hospital, so I don't think it would be a problem. I really want to avoid being a patient at the moment, but I think it is important to stay infection free in case my pager goes off.

I had 2 birthdays to celebrate on Friday.....my Bob's birthday and my son-in-laws, so it has been a busy and expensive week. It seems to be that 70% of people I know or am related to have their birthday in May. So I think that in the future I will be asking everyone who is thinking of being my friend when their birthday is...if they say its in May then I might avoid them a find a friend who has one in August! Joking aside I had a lovely day yesterday...Bob was happy with his presents and spending the day with me, and all the family came over. In the evening we went to Bobs son's and had a massive Chinese meal, so much for my diet! I treasure days like this...each day is precious and should be lived to the full. I intend to live mine.......its a struggle but worth it and hopefully my day will come!

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A CALM BANK HOLIDAY

Not a lot has happened health wise since my last post. It has just been a case of getting used to my pager and actually being on the list! This can be traumatic.. as for some reason every noise you hear seems to sound like the stupid pager. Noises that you would never have heard in the past seem to become very common..even the sound of a child's horn on their scooter nearly gave me a heart attack. But I am pleased to say that I am a little more settled now!

My breathing is a little more labored than usual. I am not to worried about it, and am trying to stay as mobile as I can. I know if I sit down all the time then it will make matters worse. With COPD it is always better to stay as mobile as possible...even when on the transplant list, as if you have no exercise and you get mucus lurking in your lungs, it will always turn to infection. I am not saying that I will be walking marathons at the moment, but even a slow walk around my bungalow will help to keep it moving...even though at times this proves much harder to achieve now! little and often is a good motto to have.

This Bank holiday my scooter has had an airing. I could hear the shops calling my name! Yes I could have stayed in bed, but the weather has been beautiful and I thought that fresh air would do me good...not that the air around here is very fresh... but better than staying inside on my PC. Yesterday we went to Cambridge. It was so nice to see family's out together. I love this time of year. At the moment I can't seem to manage the heat very well, so this weather is perfect for me! We managed to get around all the shops on the Retail Park without me knocking anyone over...which for me is a miracle. I always seem to find the highest stack of toilet rolls or some mad person who walks right in front of my scooter...if looks could kill I would have been gone a few times by now....lol. And as for toilet rolls you may have noticed that the Andrex puppy seems to be off our TV screens.... I think he is still hiding from me.

On a more serious note I have decided that if my breathing still feels like this next week then I might call up the docs and see If I do need some IV antibiotics. I am on tablets at the moment, but they don't seem to be making much difference. I will see how things progress and keep you all posted. I hope you have all had a good holiday weekend!