Please give us a break!

I had three "good days".  Good for a person with ph can be likened to somebody without ph that you think maybe, just maybe this flu is going away, its on its way out.  It is still tough to do things and the lethargy is very much still to the forefront but you manage to push past this and get a few tasks done. So there I was living in cloud  cookoo land and feeling that maybe my ph exercise classes were helping and I would not go back to the bad ph days.  Not a cat in hells chance as I realised on waking this morning after the strangest dream.( more of that later) and the knowledge that yes, here we go again, another bad ph day.

Typically today is the day that we are having a family meal. Why couldn't I have just been granted another good ph day.  My daughter is going away for the weekend with her guy for a well earned break and we are having Izzy so I thought it would be nice to have a family meal and to see where we are all up to with regard to our house sale and land.  I have planned a very simple meal, easy to cope with as Colin is doing a school run for Phoebe and will not be back until 6.00.  I need the meal to be at least almost ready for when he returns.  Chicken and ham pie is the order of the day with tiny roasted potatoes and vegetables.  The pie is now prepared, it just requires cooking, veg is prepared and the potatoes cannot be started until 40 minutes before serving so they are a last minute thing to deal with.  So now I need to rest, will think about dessert later. 

 We are beginning to line things up for us to do with Izzy starting with a concert on Friday night to see her cousin Phoebe perform singing and dancing.  Izzy will love this anyway as she enjoys concerts but with Phoebe being in it then the will be the icing on the cake.  As I don't "do" nights very well these days I will stay home and rest.  We have not got around to planning the other two days we will need to get together and have discussions and of course check out the weather.  So busy times ahead and I now need for my ph to give me a break family time is important so go away please!  

Strange dreams

I read once somewhere that we do not dream in colour.  I know for sure this is not true as I mostly remember my dreams and they are always in colour.  So I woke this morning after having a strange dream. I was with Mary Dyer, another ph patient and for some reason I was taking her to look around the house I lived in with my children until I met Colin and then all changed.  Now  loved this house as we had it built for us, we added on rooms and bathrooms over the years as the children grew.  I remember being excited in my dream as we walked to the door.  I noted the red of the drive and that the door was lovely and clean.  We entered into the kitchen and was invited to sit down immediately as lunch was ready.  This was a surprise as we were not expecting to be fed.  On looking around the kitchen I noticed that they had changed the units and they were an eclectic mix of colour and design, it looked amazing.  First course of this meal was salmon mousse and as  I was eating it I distinctly  remember thinking that I would not be hungry when I woke from this dream!  The second course was cumberland sausages with a rich onion gravy, I did not see what was to accompany this  as I never lifted a serving  dish lid.  The man that owned the house said to his wife he would take "this" out to the van, "this" being two huge slices of pork that he carried out speared on just a fork, no plate.  He was wearing a lovely crisp blue and white striped shirt.  

Unfortunately before I had a chance to see round the rest of the house I woke up!  I knew as soon as my eyes opened that it was going to be "one of those days"  With wobbly legs I managed to make the pie between resting at each stage of the making of it.  After an hours rest I decided I was not going to waste  even more time out of my day so began my blog.  

Statins

I was horrified when my doctor rang and told me that as a result of blood tests my cholesterol was 6.4.  As a result of this she wanted me to go on a low dose of statins,  20 mgs and see how I get on.  I instructed her to first of all ring my primary carers for my ph and discuss with them first before I began this as I am never sure how one medicine reacts with another.  The end result is I am on this dose and then will take another blood test after three months.  We are both a bit shocked that my cholesterol is higher than Colin's  being that he is the one that eats cheese and butter and dairy products, I rarely touch them.  If we have red meat once a week it is the most that we eat this.  We use olive oil too on salads etc so we are perplexed.  Maybe I am just one of those people who have this in my genes, who knows. Anyway there it is, yet another tablet to add to the mix of the ones I already take, it does make me wonder sometimes how it can be that we can take so many tablets and not somehow be poisoned by them all to the point of death.

In trouble again 

I was told off yesterday by a member of the support group who said that she was not receiving as much sympathy as she expected by the group as she was very poorly with different problems to cope with.  At first she had my sympathy as I care very much for each and every person we have on our support page but after sending a few messages back and forth I began to realise that this was going nowhere,  I was supposed to get onto the site and tell everyone to give this person more sympathy, she was cross that I had asked details of her diagnosis to begin with and so it went on and on.  In the end she said she was leaving the group.  I explained that there was nothing  I could do if people did not respond to her posts.  If she had received abusive messages or bullying then that would be different.  As she went on to tell me how sick she was, and yes she does have different conditions I needed to tell her that we ALL have problems on here, we are ALL very poorly and we all have our own problems to deal with too.  As she had only been a member for around three weeks her name would not be recognised yet by everyone and to give it time.   I begged her to stay awhile and see how it went but no, she has left us.  

Of course it appeared that it was my fault as I did not monitor her post closely enough to see how people responded to her.  Now with the best will in the world we have over 1600 people on here.  I think Paul and I do a good job all things considered.  As others on here that admin ph support groups we that do this also suffer from ph.  We do not just spend a few minutes a day on this site.  We spend a big chunk of our days adding people to the support group, sending messages asking for details of those wishing to join, we take pride in trying to sort out any problems that do come along but we too have ph.  We have our duvet days, we have all the appointments that come with this disease.   So with the best will in the world we cannot monitor each and every post and then monitor each and every response.  We trust that where there are problems they get reported to us and we try to deal with these problems fairly, listening to both sides of the argument.     So it was that she left the group, I had two minutes of regret but then decided that I must move on, I was not got to get poorly stressing out when she clearly had made her mind up.  Very sad to lose her but we all want something from this group but I feel she expected just too much from us all.  

Down and out for the count

I left the blog yesterday as my condition deteriorated as the day progressed.  I was gutted to have to ring my ph exercise class and say I would not be attending.  I know I would not have been able to do a single exercise and I love this class.  I sat in the chair feeling terrible.  

Time to collect Izzy from school, something normally done by grandad but he was busy collecting our other granddaughter from school miles away. It would have been irresponsible to drive my car so opted for my mobility scooter instead.  Sods law that when I took it out I realised it was low on the battery power.  Still I just hoped I could make it to school and back.  Izzy was happy to see me and jumped onto the scooter with me,  I explained the situation about having not much power and she was happy to keep checking the battery indicator for me all the way home.  On arriving at the garage and parking the scooter she told me to hold onto the walls and she would open all the doors for me.  Lovely but sad too that a girl of six needs to take care of grandma.

The meal went well, everyone enjoyed it and I even managed a tiny piece of the pie before I one again took to my chair.  Eve when not feeling well family can make you forget yourself for a while.

PH news

This link came up on my newsfeed and I think it says it just how it is.  I believe for the newbies it would be great for you to show family and friends as it explains all.

Every Breath Matters with Pulmonary HypertensionGet to know about pulmonary hypertension, with this video featuring patients and team Phenomenal Hope as they take you in a journey through their...pulmonaryhypertensionnews.com

Sad sight to see

I attended my warfarin clinic today and was sickened to see a young, very expectant mom stood outside the maternity unit wearing her dressing gown and slippers and smoking.  Now the very fact that she was so young told me that she obviously knew of the dangers of smoking for her own health but to put her baby at risk made me feel very sad indeed.  Enough said.

Time to go as se have an appointment in town today.  Go well and warm love to you all.  Thank you for reading the blog and a huge thumbs up to those that click like .

Carole xxx