My Week in a Box

A jumble of boxes!

This week I decided it was time to get some more organised systems for all the tablets I need and get a proper grip on all the medication, as I am feeling a little overwhelmed with it all - partly because there is so much of it and each one seems to keep running out at different times, so keeping tabs on it all feels like a precision military operation at the moment! Sounds a bit pathetic after all those intravenous drugs I used to take, but it feels like I'm starting all over again and it's time to start trying to get a grip on it all and get some control over it.

To start off I wanted to get some tablet boxes, so I can stop fumbling around with loads of packets early in the morning when I need to take most of them and get myself organised for the day. Of course when checking out various tablet boxes in a few chemists none of them were quite suitable for separating out the various quantities that need to be taken at different steps of the day, but we managed to find some where you could break up the weekly strips they come in and put them back together again in a daily strip, perfect, so we ended up buying four sets so I could split up my tablets in the order of my day. I also bought another separate weekly strip just for the 6am tablet round that I can just leave upstairs by my bed. 

Bedside treats!

This feels much more organised now, easier to remember what to take and when and easier to pop in my bag if I'm going out and about or away from home or in hospital. It's a lot more practical in an emergency too. No more packets of tablets being carted around or scrabbling about with first thing in the morning, just a sort out of tablets once a week, which doesn't take long. 

The next thing to sort out was the monthly prescription with my GP, as it is coming up to 3 months since my transplant and Papworth only prescribe all the drugs for this period. My GP has already agreed to prescribe some and then refused to prescibe others, obviously the ones he has refused are the more expensive ones, as he says they will blow his prescription budget for the year! Luckily for us and with some great relief, if this happens, then Papworth organise the prescriptions for those the GP refuses. As usual it seems to be the great nationwide post code lottery as to whether your GP will do the drugs for you or if your Primary Care Trust will pay for them or not! It is a bit ridiculous there is not just one system of obtaining the drugs you need for survival throughout the country. 

We tried to make another appointment at the doctor's to sort everything out properly once and for all, but had to try and do it with the doctor's receptionist in the end, as there are no appointments left at the doctor's now until after Christmas unless it's an emergency! Another issue that is in the fore in the news this week, doctors and A & Es on overload! Two days notice needs to be given at my doctor's for prescriptions, which is fair enough, but two days later and there was still no prescription signed off for me. Come back tomorrow I was told. Good that I was trying to organise this with some time to spare and time to still get an emergency appointment if needed. Another visit the following day and it was eventually all sorted, thank goodness, organised at last! 

My week in a box!

Hopefully things will settle down now and I'm hoping I can just get back to how I used to manage my old drugs - on a repeat monthly prescription and never getting too close to ever running out! On a good note, the pharmacy has been really efficient, they know me well already and asked me for details of all my new drugs, so they can be prepared for when I bring in my prescriptions, so that is really encouraging! 

I don't usually look back in the past, but I can't help think of those more carefree days, before I was ill, when I used to think it was an inconvenience to have to make the time to pop to the chemists for a bit of lemsip and cough stuff when one of us just had a trivial cough or cold! I never appreciated how easy it was - both to sort the medication out and just run the course of a cough or cold - and I'd even be guilty of a good moan - how I could 'eat my words' now I have had that real first hand experience (and for the second time around now) of what many people with serious illnesses or conditions have to cope with! 

And the tree is up!

A bit more patience and peserverence and I know will be back to my usual organised self by the New Year! It is definitely going to start in a more organised fashion if I have anything to do with it! 

It is getting nearer to Christmas, we have decorated the house inside now and put up the tree, well a few trees, and we are getting in the Christmas spirit. Last of the cards have been posted and last of the presents bought and wrapped. I have also hit another target today and been for a walk of about a mile this time, so am feeling very proud that I've made a big step towards my longer term goal of going for a proper long walk. I've been back on my exercise bike each day this week too and am on a mission to try and get fitter, so a positive week all in all.

I am also thinking about my donor a lot at this time too and how I have already had my Christmas present, the most precious gift and greatest gift ever - the gift of a new life and new opportunities. If you want to do one good thing this Christmas and haven't already, please sign up to the organ donor register, the link is posted below. 

This decoration, from Papworth Hospital Charity, is in honour of my donor, who I am thinking of at this Christmas time