4 DPO - 14th May 2010

This is my lowest day so far, I have been up so much in the night with the pain. A new lady is due to go down to theatre this morning for a hip replacement. She has already had several other similar surgeries. I begin to worry that maybe mine hasn't worked and I will be back in here in the future too. Maybe that is why I am so much pain still?

When the physio arrives we talk about my going home - it won't be until next week and only if I can walk to and from the bathroom unaided several times in a day. I am happy this is the goal. Although I am disappointed that I also have to sit in a chair for 3 hours to make sure that I can cope with the journey home. It appears the hospital are not going to offer me transport home as previously suggested.

I also still have my catheter firmly in place and attached to my walking frame - which I can now use to get from bed to chair. I ask every nurse today if they can remove it and the answer is always later.

This afternoons checks show I have a temperature and low blood pressure. It has always been fairly low but it seems to have dropped a bit today. The doctor comes and tells me they hope its just because I am getting used to moving after being still for so long and nothing more serious.

This evening I feel a little better, the sun setting has turned the sky a beautiful red and the view over London actually looks quite nice this evening maybe that's just all the morphine?

2 DPO - 12th May 2010

Today starts exactly the same as yesterday, awoken very early for checks and tests and then waiting around until 8.00am for some breakfast to arrive.

Luckily there is a nice nurse on the ward who offers to get me some tea from the kitchen as she has noticed I can't do anything for myself.

I really enjoy that cup of tea. The porridge however I can only manage a few mouth fulls again.
Around mid morning again the physio returns. This time with a rather large frame that would allow me to stand up and lean on it with the full length of my arm from able to wrist.
The aim today is to get up from the bed and stand.... the reality is I nearly faint just moving from lying down to sitting on the edge of the bed. The room is spinning and I so want to throw up. After deep breathes I manage to keep down the porridge and allowed to rest. She will be back later with someone else to help.
Straight after the surgeon arrives, he tells me how pleased he is with how I did and that the operation went really well. He does suggest though that I am not recovering as well as he would have hoped - probably due to how long I had spd for before surgery and that once a bed is found in the orthopaedic ward I will be moved there and kept in over the weekend. I am not really disappointed. I know I am struggling and could not manage at home like this, so the best place is to be here.
This afternoon I am taken down to X ray - thank fully this is done over lunch time so I don't have to worry about refusing that meal. The guys in x ray are great and manage to move me from my bed to the x ray table without hurting me at all. I tell them they need to teach the porters and the staff on the ward that trick!
After the x ray I am left in the waiting room of A and E with everyone walking past my bed having a good old stare at me. I feel like i am on show. Maybe it is the great big bag of urine hanging from the end of my bed!!
Once back on the ward the lovely nurse from this morning comes over and tells me I have a urine infection and that I am to be put on another drip of antibiotics as well as the one I already have in. To be honest it feels like no big deal considering what I have already gone through. They can stick 20 cannula's in my arms for all I care.
Tea time is a jacket potato, I am grateful I can eat almost half of it. That gives me enough strength to be able sit up again when the physio returns. She says though that she is going to take my frame up to the orthopaedic ward where I can reunited with it tomorrow. She doesn't want me tempted into going for a walk on my own - seriously she has no worries there!
As night falls another nurse and a new young male trainee arrive to give me the pleasure of a bed bath. Urm - can I say no? Apparently not! So I am shuffled back and forth from side to side and scrubbed and changed into my own nightwear - which to be honest feels very nice indeed. I feel clean and have a clean nightie on. I am pleased because Andy and Molly should be here very soon. They were leaving home at 4.30. No sooner thought then my phone rings, they have been stuck in traffic for 3 hours now, I decide they should go home as Molly has already fallen asleep. I tell Andy that I am to be kept in over the weekend anyway so they can come and spend some time with me on Saturday instead.
A couple of other ladies on the ward talk to me tonight. They feel sorry for me for having no visitors! I don't mind, we chat and compare notes on the staff and all get to tell our horror stories of surgery. I win on the comparing wounds front - the one which I can show them is across the left side of my stomach - it looks worse than it is because of the staples. The other wound is too low down  to show someone I have only just met.

Two more sleeps

Well today has all been about packing bags, buying pj's and dressing gowns and basically getting things organised for my hospital stay.

The hospital phoned yesterday and said in 3 days time I was to be booked in for surgery. That left me in a whirlwind or organising rota's for who would look after Molly and writing lists of things I needed to buy, pack and leave behind for my family.

I have a list of things to buy to take, buy to leave so I can set up recovery room for when I return and things to organise so my husband can run the home without me.

I am concerned he won't know how to use the washing machine, that Molly will go to preschool with no juice, that they will eat frozen dinners every night and that Molly may miss ballet lessons or Sunday school.
None of these things in themselves are a disaster but today they feel like the most important thing in the world.

So I have cancelled friends who were due to visit this weekend, spent far too much money in Tesco this morning, done my last ballet class with Molly for some time, and packed a huge selection of pants, pj's and books in to my hospital bag.

I have written a list of my friends numbers and what days they are having Molly on the table, a list of where she needs to be on what days and by when and a list of things to do during the time I am away. It all feels so final and so scary.

Fairground Theory

So the point of this was to explain what my life is like living with PGP. Being in constant pain and limited to what you can do each day is a frustrating and sometimes depressing situation that is hard to explain. New friends and some old ones, just don't understand. I don't look particularly ill so it's easy for people to forget how debilitating it can be. So here is my fairground theory.


Everyone in the world lives with a wrist band. This wristband entitles you to do whatever you please all day.You have full access to whatever you choose to participate in. The whole world is a fairground and you can participate in it as much as you like.
For me I have been given 20 tokens for the day. Each day I am given 20 tokens. When I leave the fairground for the night, I have to hand back any unused tokens, I can't save them up for the next day.


Each daily task in life uses a token, nothing is for free. So getting up and getting showered uses 2 tokens. Walking my daughter to preschool uses 4 tokens - 2 there and 2 back. If I stop at the shop on the way home to get some food shopping I use at least 1 more token


So by 9.30 I have used 7 tokens and have only 13 left. I have to use them wisely, which often means tasks, chores and even the nicest of things sch as going for coffee with a friend has to be missed, not because I don't have the time or the money but I don't have enough tokens left.


By 12 I have done the washing (2 tokens) washed up (2 tokens) and made lunch (1 token).


I have 8 tokens left.


I do some work this afternoon, I have a baby portrait to do. Because I have to get up and down on the floor and move around, I use 4 tokens doing less than an hours work.


I have 4 tokens left - I can't now walk to collect Molly from preschool as I would have no tokens to take her to the park, and make her dinner and bath her. So I drive there to use I token, and leave 3. I take her to the park - use 1 token, leaving me with 2. This is enough to make tea and put her to bed. The bath will have to missed tonight because I have run out of tokens already.






On Monday I am changing in my tokens and hoping for a wristband.