Friday, 24 August 2012

Just Like Old Times August 2012

St Annes on Sea - a childhood haunt of mine  
We went back to the Lake District for nearly two weeks after Rob and the girls had been to Lee Valley. The journey up was a good one and we were listening to the Olympics on the radio all the way up, getting a bit frustrated we couldn't see it on the TV as Team GB were winning yet more medals! As I said in my previous blog, I had some new places earmarked to go to and some old favourites I wanted to visit. I was feeling very well, the nausea amd stomach problems had subsided to an extent.

I had decided for this holiday, no posh hotels, no posh dinners, no changing medication times, no trying to go out earlier in the day that I can manage, no pressure to keep challenging myself. I would just do whatever I felt up to and no more.

The weather was managing to keep fine and we went out and about to places old and new, days went by and I realised I had been feeling pretty good as we kept getting out and about every day with no incidents, I was even suggesting calling at the pub for a glass of wine. I am allowed one glass of wine per day if I like, but to be honest for months and months I hadn't really felt like it. There may be an odd time when I fancy a glass and then by the time I've poured it I can't face it, so this was highly unusual for me.

The estuary near our cottage at Milnthorpe 
We were then extremely fortunate with the weather and by day three it had become glorious, blue skies, warm sunshine, big fluffy summer clouds. We had loads of picnics and outings and I have to say felt the best I've ever felt since finding out I was ill. I kept thinking it would stop and the next bad day would come, but no the good days just kept coming and coming.

We had a fabulous time, except for the restrictions I have such as walking too far and tiredness, life felt as close to old times as it had ever been.

The Olympics were still going on for some of the time while we were away and this provided second to none entertainment each night on TV and on the radio as we travelled about. We enjoyed the closing ceremony and afterwards felt like we were having withdrawal symptoms!

Holehird Gardens,  Nr Windermere
We came home for the A level results and Rose got her grades, A,B and a C, so got her place at university. She will be leaving home in September to go to Bournemouth. She had been really hoping to get that C for biology, so she could keep her total number of points high enough to get in university, but had felt a bit wobbly about it. One of the things that clinched this grade for her was her course work, which she got an A for. She had to do a report about a drug and she chose Epoprostrenol. I suppose PH has to have its uses, that and the examiner probably found it interesting as it is a rare drug for a rare condition!

Sarah, also, was on her second interview for a new job, so we were keeping fingers crossed for her too. She has also just completed her first year of her Sociology degree with the Open University.

I am so proud of how my girls have coped with my illness and poor prognosis and how they have just buckled down and got on with things through it all, they have been so strong through a lot of trauma, especially when they have both had to contend with exams.

I went to see the doctor about my skin problem as it just would not clear up. She thinks it may be a fugal infection and has prescribed me some anti fungal and steroid cream, so I will see how that goes.
It is a real nuisance as I'm still feeling pretty good within my limitations, there just always seems to be something. Of course my INR had also gone a bit haywire with my little wine tipples, but I think my nurse just thought 'good for you, enjoy while you can', she has just adjusted my warfarin to enable me to have a glass or two a week now if I'm still feeling like it!

You cannot get away with anything when you have PH and are on the Transplant List -  a little drink, putting on an extra pound or two, sneaking off somewhere further than an hour away - someone always has to know or finds out!

Coniston Water
Rob and I had discussed a month or two ago about him returning to work just on a part time basis. I feel it would be managable for me if he worked a couple of days a week and we can try and get some normality back during this long wait. We have had a year together now without any work comittments and had some really good times together, got ourselves back on track, taken stock and I'm sure this has contributed to me now being so stable. Funnily enough on our last day in The Lakes, he was contacted by his former boss to see if he would be interested in some part time work. This has come at just the right time and he is now pursuing it further and hopes to start in September. I am so proud of him too, what he has done for me and how bravely he has coped. I'm feeling we have all got through to to this stage somehow with some success and we are getting used to living with PH and being on the Transplant List.

Rose has gone off to Reading and we are going back to The Lakes for the August Bank Holiday and some of the following week. When we get back its going to be all change once more in our household, but change for the good I hope.

I miss swimming, but I can paddle!

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