Stress

It has been a while since I last blogged but quite a lot has been going on and it has been difficult finding the time plus because I have felt under so much stress the blog probably would have been so negative anyway.

Firstly my role as a trustee for aHUSUK has come to an end. This decision was not taken lightly and after confiding in a few friends on what would be best for me they all agreed my resignation would be for the best.

I always state I will tell the truth on here but talking about my reasons for leaving would not achieve anything so if we just say the stress of all the work got to me I would say that is a sufficient answer.

I have kept my role as a patient congress member for North Staffs CCG and am also really enjoying my role within my surgery’s PPG.

I recently changed my medication due to the damming restless legs and due to the side effects it put me in hospital for a few days. I cannot remember the last time I felt so ill and really did not enjoy having a camera put down my throat!

Anyway I stopped the meds and the restless legs have come back with a vengeance so  after 3 nights of no sleep my consultant wanted me to just give them another go.

Took a tablet last night and the side effects kicked straight back in again…I will not be taking those stupid tablets again as I never want to feel like this again. Will just have to wait and see if they are willing to try some different medication.

The weather is starting to become a lot nicer now and is giving me chance to get in the garden which I believe helps to motivate me,     it also comes with its downfalls. When it is sunny and people are in their gardens enjoying a barbeque and I have to go on dialysis I tend to get grumpy and also when it gets warm I want to drink more and on a 1 litre fluid restriction I get even grumpier when I cant.

We had a car in October and ever since it has spent just as much time in the garage as on the road and the end it ended up costing £3000 to be repaired so there is this year’s holiday out of the window, we will just have to make do with a few day trips in our virtually new car ha ha!

Sarah started and completed her 22 mile super swim for aHUS and I will be counting the final amount raised tomorrow. She managed it in 7 weeks, on time and did a fantastic job, well done Sarah!

So all in all I have had stress but I have also cut it out and am now concentrating on getting better for the summer.

On a positive note my consultant is putting in an IFR (individual funding request) to the hospital for me to the get the drug I need for a transplant. This is great timing as I have just passed all my tests for transplantation.

Th chances of me getting funding are very slim but if I don’t try then I will never know.

Anyway sorry to keep it brief, will try to write sooner next time

TTFN

Lisa

xxxx