It's Been a while

I can't believe it was September when I last wrote, shows how quickly time flies and so where do I start.

Jasmine started school and absolutely loves it. She even achieved the headmasters gold star award in her school in the first term, we are so proud of her more than words can say. Who would have thought this premature little angel we thought would never make it could achieve so much already.

Next came Christmas and we had a wonderful time and dialysis went reasonably well but Jasmine was ill with a cold on and off for a few weeks.

At this point we still had not heard anything from Earl Howe on the decision for funding for the drug Eculizumab and so we held our breath for a bit longer thinking we may hear something after the Christmas holidays.

Over the past 3 months a few things seemed to of gone wrong with a broken washer, broken car, broken boiler etc all adding to high stress levels and upset. Plus Chris has seemed to of gotten worse with his illness as well which can be difficult when both adults within the household are poorly. Somehow we have managed to muddle through with the help of family, friends and determination.

Chris is still undergoing tests and we hope that eventually he will start to feel better.

As I treat my blog as a diary I do keep it personal and that way it is up to the person if they choose to read it, it is not meant to offend but if you feel it does you have to question yourself the reasons why?

Over the past few months I made a personal discovery that life moves on and sometimes things have to change within your life in order to move forward and be at peace.

I realised that the reason I missed work was I was actually missing the ‘good old days’ when work was easier and I was younger and we went to the pub at dinner. We were all young, free and single and had no worries and we would go out at night and worry about the morning after when it happened. This wasn’t the work I left; it was harder, longer hours, less staff, more to do, no nights out, more stress etc. If I was still at work it wouldn’t be how it used to be and nothing could change that.

I also realised that keeping in touch with friends was harder, it was more one sided. I would get invited out by some and others would be pleased to see me and others weren’t bothered whether I was there or not. This got less and less and then I realised I had been friends with these people for over 10 years and actually I was not in their lives at all. Whenever anything important happened I was never a part of it anymore and I got upset and resentful. I did not like this aspect of me and made the final decision to cut ties altogether and since then I have started to feel better.

I mentioned in my last blog I may have some news on a position I went for. Well I successfully got the voluntary job and its working for the CCG which will replace the PCT’S in April 2013 as a patient congress member. Basically I help to feedback patient ideas, thoughts and experiences to help when commissioning in North Staffs. It’s only every 2 months so it is great for low stress levels and no exertion.

We finally got the decision from Earl Howe with regards to the Eculizumab and due to funding they were turning the proposal down for the time being and referring it to NICE when they take over in April even though AGNSS decided the drug was clinically effective.  This hit me very hard and I got quite down. The reality that we wouldn’t get the next decision till at least mid-2014 and if it was a positive one the average waiting time for a transplant is 3 and half years. The thought of facing another 5 years plus, just waiting depressed me and I got stuck in a rut.

I then concentrated on lobbying again within my role as trustee for aHUSUK.

We published a new e-petition and I set my sights on contacting MP’S again.

I was spending on average 2 and half hours a night on this alone and a lot more in the day when I was free.

It does get to the point though where you have nothing to show for your work but you know deep inside what you have done and that just has to be enough despite what comments are made.

Myself and Chris did an awareness stall at our local hospital, it wasn’t a great success but at least we tried.

My friend Sarah Probyn also offered to do a sponsored swim, the distance of the English Channel for the charity in my honour. I was so overwhelmed. I agreed to do the promotions as she was doing all the hard work.

We set up a Facebook page and sponsorship is coming in nicely.

The biggest step I have made is asking for a new consultant. I do not feel I had the right bond with the one I was currently under. I do not feel she understands my disease enough to treat me unbiasdly without personal opinion and this had to change. This was a hard decision for me but I did it and am now waiting on the outcome,

Finally whilst I have been making this ‘personal discovery’ I realise if I don’t like something, someone or a situation I shouldn’t have to accept it.

Life is too short.

Therefore I may be making a few changes in the future which may involve people and things not being in it - but if it makes me happy isn’t that what life’s about?

Oh and we won’t mention the bedroom tax or I may just boil over!!!!

TTFN

XXXX