Its frustrating. its saddening and damn right maddening.
Many years ago one of the physios I was seeing spoke to me about applying for disability allowance and disability benefits. At the time I was a little offended. I was so stubborn that this was not a permanent thing that I would get better. This week has been a bit of a shock. It appears that the new pain down my left hand side from back to knee is from a group of muscles working too hard to compensate for the fact that some of my pelvic muscles just dont work. The fear is that this is permanent that where the msucles have been cut through for surgery some have not reattached and no longer work. There is nothing that can be done if that is the case, and although I am in less pain then I was pre surgery and I am happy about that. I would be left disabled and in need of at least one stick permanently. Not so hard to swallow to be honest. Out of all this I have a beautiful daughter. Had I become injured in a car accident I would no doubt find it harder to take. What I do find frustrating is the ridiculous system in place tryign to get disability benefits etc. Its a red taped different world of jargon and reason I can't understand. I kind of wish I had done it all years ago - I certainly would be much better off. I am not particularly good at beign pc so I may offend some people with this. But how can I be disabled. I have only had a baby - almost five years ago. A perfectly nautral act that occurs every day. How has it left me like this.
How do I get benefits? Do I bother? Well yes the money woudl be nice but am I morally entitled to it? I haven't done anythign spectaculor. I haven't been out defending my country on the streets, I haven't been protecting my country and others fighting with sub standard equipment, do I deserve this?
Thursday, 28 October 2010
Tuesday, 19 October 2010
Oh my aching bum - spd 5 months post surgery
Well as the title suggests I am now 5 months post op. I could not have imagined how much hard work it has taken to get here, the ups and downs, the lows and highs - literally, and the feeling of pride when I see how far I have come.
I have suffered with spd or pgp for five years. I have put on weight which was incredibly depressing. I had to give up my beloved tae kwon do which not only meant losing my fitness but I lost many friends through this too as we no longer had things in common and to be honest I think I scared of them. I struggled to keep up with my daughter who seemed to grow in leaps and bounds in the blink of an eye and my relationship with my husband has certainly been tested.
Today I can see a future though. I have lost 3 stone since the surgery and am so close to my pre pregnancy weight I am delighted. I know longer have the dull ache in my back and hip that radiates from the pubic bone and I can sleep pretty much through the night without having to wake for pain killers. None of these things I would have been able to do without the operation.
I am still in some pain - and worryingly some of it is a new pain. It runs from the inside of my groin round to my left buttock and down the left thigh bone. I have no idea what it is and my physio and hydro therapists are hoping its just due to increased exercise. The plan is to see if it subsides in time. I am back seeing my wonderful surgeon on the 3rd November and I can't wait for him to put my mind at rest on the latest pain. Whatever it is though I am sure I am better off now than I was.
I have suffered with spd or pgp for five years. I have put on weight which was incredibly depressing. I had to give up my beloved tae kwon do which not only meant losing my fitness but I lost many friends through this too as we no longer had things in common and to be honest I think I scared of them. I struggled to keep up with my daughter who seemed to grow in leaps and bounds in the blink of an eye and my relationship with my husband has certainly been tested.
Today I can see a future though. I have lost 3 stone since the surgery and am so close to my pre pregnancy weight I am delighted. I know longer have the dull ache in my back and hip that radiates from the pubic bone and I can sleep pretty much through the night without having to wake for pain killers. None of these things I would have been able to do without the operation.
I am still in some pain - and worryingly some of it is a new pain. It runs from the inside of my groin round to my left buttock and down the left thigh bone. I have no idea what it is and my physio and hydro therapists are hoping its just due to increased exercise. The plan is to see if it subsides in time. I am back seeing my wonderful surgeon on the 3rd November and I can't wait for him to put my mind at rest on the latest pain. Whatever it is though I am sure I am better off now than I was.
Thursday, 16 September 2010
I can't believe its September already
Wow not sure where the time goes because I don't feel like I do an awful lot. The summer has flown by and we spent many days just me and Molly going to the beach or soft play places and zoos. It took a long time to get around most of them and each visit rendered the following day a lazy day as I was generally unable to move. I am still on the full dose of tramadol and the plan is to start reducing them from Monday next week - wish me luck because I will need it!
I have started hydrotherapy this week and have also been given some land based exercises to do. My therapist was lovely but the other ladies in the pool say she is too hard on them.
Have you ever done hydro? Its a strange thing. You go into the changing rooms in the local hospital and put on your swimming costume and one of the hospital dressing gowns. You have to sit around a table at first and drink some water whilst you wait for the group before you to finish. Everybody wants to know what everyone else has done and if they have had surgery. You are in groups so my group are all post op with lower limb issues. The guys are mostly rugby or football injuries, the older ladies hip r knee replacements and then there is me. The boys are not particularly interested - I imagine it must make them squirm a bit but the older ladies want all the details!!
Anyway once in the pool - which is near body temperature you all do your own exercises set by the therapist she checks up on you every few minutes. Some people are keen to get on and try more - which results in a telling off in case they ruin the surgeons work others complain of the pain and you can hear the therapists trying to encourage them but also biting their lips and seeming unwillingness to get better. Getting out of the pool is hard work, as you suddenly hit cold air and have your full body weight back. I shower and dress and book in for next weeks appointment, I have to make note of when I get pain etc so they can see if we need to up the exercises or cut back on them.
I have started hydrotherapy this week and have also been given some land based exercises to do. My therapist was lovely but the other ladies in the pool say she is too hard on them.
Have you ever done hydro? Its a strange thing. You go into the changing rooms in the local hospital and put on your swimming costume and one of the hospital dressing gowns. You have to sit around a table at first and drink some water whilst you wait for the group before you to finish. Everybody wants to know what everyone else has done and if they have had surgery. You are in groups so my group are all post op with lower limb issues. The guys are mostly rugby or football injuries, the older ladies hip r knee replacements and then there is me. The boys are not particularly interested - I imagine it must make them squirm a bit but the older ladies want all the details!!
Anyway once in the pool - which is near body temperature you all do your own exercises set by the therapist she checks up on you every few minutes. Some people are keen to get on and try more - which results in a telling off in case they ruin the surgeons work others complain of the pain and you can hear the therapists trying to encourage them but also biting their lips and seeming unwillingness to get better. Getting out of the pool is hard work, as you suddenly hit cold air and have your full body weight back. I shower and dress and book in for next weeks appointment, I have to make note of when I get pain etc so they can see if we need to up the exercises or cut back on them.
Wednesday, 11 August 2010
My Big Day was the best ride yet
Andy and Molly were both coming with me today. Andy couldn't take another day off work so spent a lot of the time before we left sending mails. I was getting more and more wound up about the appointment and struggling to get Molly ready, toys for her for the journey and enough snacks together for the day!
When we finally got there after sitting in traffic forever I want off to x-ray whilst Andy took Molly off for lunch. I didn't want her to hear some of the conversation I wanted to have with the surgeon, which was a shame as it meant Andy missed it.
When I got back to orthapeadics he was really laying in to trainee registrar. It was really quite funny. The poor bloke was so embarrassed as he knew I heard every word. My surgeon is very good and therefore a little arrogant, he seems to be able to charm or disarm people as he wishes. When I was called into the surgeons office to look at the x-rays I was so relived. All the pins are in the right place. We looked over all the old x-rays and everyone was impressed at how far out my pelvis was and to where it sits now. It feels amazing to know all the pain and the tears have been worth it.
I have another 3 months of being very careful walking and using the crutches outside the house but if I am sure I am absolutely fine I can lose them sooner. I have a lovely letter for my local hospital to ask them to start physio and hydro too. That will be the best bit seeing how much I can do and working on little exercises or something to start making it all better. I can't wait to get back in that pool.
I go back to the surgeon in another 12 weeks. I shall be stick free and addiction free by then just you watch!
When we finally got there after sitting in traffic forever I want off to x-ray whilst Andy took Molly off for lunch. I didn't want her to hear some of the conversation I wanted to have with the surgeon, which was a shame as it meant Andy missed it.
When I got back to orthapeadics he was really laying in to trainee registrar. It was really quite funny. The poor bloke was so embarrassed as he knew I heard every word. My surgeon is very good and therefore a little arrogant, he seems to be able to charm or disarm people as he wishes. When I was called into the surgeons office to look at the x-rays I was so relived. All the pins are in the right place. We looked over all the old x-rays and everyone was impressed at how far out my pelvis was and to where it sits now. It feels amazing to know all the pain and the tears have been worth it.
One stable pelvis (with a little metal work)
I have another 3 months of being very careful walking and using the crutches outside the house but if I am sure I am absolutely fine I can lose them sooner. I have a lovely letter for my local hospital to ask them to start physio and hydro too. That will be the best bit seeing how much I can do and working on little exercises or something to start making it all better. I can't wait to get back in that pool.
I go back to the surgeon in another 12 weeks. I shall be stick free and addiction free by then just you watch!
Tuesday, 10 August 2010
3 Months on
I can not believe it has been 3 months now since i had my operation. I have hardly used the wheel chair this month at all. I am now pretty free to move around the house unaided too. All this has made a big difference to being able to look after Molly.
I am still taking all the tramadol. I know I am dependent on it and can tell if I am only a few hours late missing a dose, not just because of the pain levels but I also start to feel agitated and emotional. I am amazed at my dependency on the drug (and a little scared). Hopefully I will be able to talk to my new doctor about this soon and work out a plan to come off the tramadol without experiencing the withdrawal. I am also still on warfarin to prevents any clots. Although there is not really much of an issue being on warfarin apart from staying away from sharp knifes and having to have weekly blood tests it would be nice to not be taking drugs continually.
I have met with a few old friends this month too. People I have not seen since before the operation but who also knew me before I had Molly. They all think I am not only looking more like my old self but acting like her too. I am glad I look better I only hope its a good thing I am acting differently too!
Tomorrow is a big day. We are back at the hospital again for more x rays and a review from the surgeon. I am hoping tomorrow I will be given the all clear to start physiotherapy. I think this will be another big step in the recovery as this will help me use the muscles correctly now that the pelvis physically can no longer move.
Think good thoughts for me please and pray if you do
I am still taking all the tramadol. I know I am dependent on it and can tell if I am only a few hours late missing a dose, not just because of the pain levels but I also start to feel agitated and emotional. I am amazed at my dependency on the drug (and a little scared). Hopefully I will be able to talk to my new doctor about this soon and work out a plan to come off the tramadol without experiencing the withdrawal. I am also still on warfarin to prevents any clots. Although there is not really much of an issue being on warfarin apart from staying away from sharp knifes and having to have weekly blood tests it would be nice to not be taking drugs continually.
I have met with a few old friends this month too. People I have not seen since before the operation but who also knew me before I had Molly. They all think I am not only looking more like my old self but acting like her too. I am glad I look better I only hope its a good thing I am acting differently too!
Tomorrow is a big day. We are back at the hospital again for more x rays and a review from the surgeon. I am hoping tomorrow I will be given the all clear to start physiotherapy. I think this will be another big step in the recovery as this will help me use the muscles correctly now that the pelvis physically can no longer move.
Think good thoughts for me please and pray if you do
Thursday, 5 August 2010
Saturday 26th June - withdrawal
I don't quite no where to start with this, so here is a brief update. The last few weeks I had been doing great felt like I was turning some big corners. I can walk a little further and was getting used to the pain. So much so that when I started to run out of pain relief. I didn't realise the implications. I am down to only really relying on Tramadol now, so when I noticed I was low I phoned the surgery for a repeat prescription who said the earliest would be Friday lunch time. I had only enough for one dose and I needed two. So I missed the night time dose and took some other fairly strong relief instead. I couldn't get to sleep and the next morning felt incredibly teary and frustrated. I was scared to take the tramadol now as I recognised these symptoms for the withdrawal I suffered coming off of the morphine. I began to panic and phoned the doctor. He explained he has already signed the prescription for tramadol but would issue another for something else if I wanted it. Wanted it? I don't know what I want but I know I am not right. I wanted someone to take charge and tell me what to do. I phoned Kate instead - we arrange to meet at the chemist. After I pick up prescription we sit in the coffee shop. Kate is worried. I collect Molly from preschool and Andy takes us home. That night the pains start. I have stomach cramps, sickness and diarrhoea and the shakes and sweats soon follow. I have no idea what to do. I start seeing things and really begin to panic. By morning I am a wreck. Andy is taking Molly to ballet and I know I can't be alone. I have a hair appointment already booked so I decide the best thing is to go to that rather than be alone.
As I sit in the hairdressers for nearly 3 hours. I regularly leave to be sick and have to explain why I am ill. I decide to phone NHS direct who advise to get to a walk in clinic or hospital asap. I leave with gorgeous hair and the body of the dead. At the walk in clinic there treatment is amazing, I am advised to get a new doctor who should refer me to counselling and also manage withdrawal, I am put back on the same high dose of tramadol and told I should be weaned off over 5 months.
I am unable to cope with Molly this afternoon so whilst Andy takes a much needed nap a friend looks after her while I go to another friends for coffee. I let it all pour out and sit and cry for hours. I feel a little better after!
So, I have now registered with a new surgery and already seen my new doctor. He seemed a little surprised at my account. I shall make another appointment to see him soon to discuss moving forward.
So that's it really back on the painkillers and living life with crutches or a wheelchair.
As I sit in the hairdressers for nearly 3 hours. I regularly leave to be sick and have to explain why I am ill. I decide to phone NHS direct who advise to get to a walk in clinic or hospital asap. I leave with gorgeous hair and the body of the dead. At the walk in clinic there treatment is amazing, I am advised to get a new doctor who should refer me to counselling and also manage withdrawal, I am put back on the same high dose of tramadol and told I should be weaned off over 5 months.
I am unable to cope with Molly this afternoon so whilst Andy takes a much needed nap a friend looks after her while I go to another friends for coffee. I let it all pour out and sit and cry for hours. I feel a little better after!
So, I have now registered with a new surgery and already seen my new doctor. He seemed a little surprised at my account. I shall make another appointment to see him soon to discuss moving forward.
So that's it really back on the painkillers and living life with crutches or a wheelchair.
Wednesday, 30 June 2010
Friday 11th June
I have Molly to myself this evening and it is the most beautiful evening in a long time.
Andy has gone back to Coventry to watch the England game so my friend collects Molly from nursery for me.
I explain to Molly she needs to be extra good and help me help her and she is a dream. She helps me in the kitchen make her dinner and offers to lay the table. Although to be honest this was a waste as we sat on the couch and watched scooby doo whilst eating dinner instead.
At 7.00pm Molly announced it was time for bed. We went upstairs and read a book and then Molly said night night. I made my way down stairs and did not hear a peep out of her.
I am so proud that even after all the changes to what routine we did have my lovely lady knows how to behave to help her mum.
Andy has gone back to Coventry to watch the England game so my friend collects Molly from nursery for me.
I explain to Molly she needs to be extra good and help me help her and she is a dream. She helps me in the kitchen make her dinner and offers to lay the table. Although to be honest this was a waste as we sat on the couch and watched scooby doo whilst eating dinner instead.
At 7.00pm Molly announced it was time for bed. We went upstairs and read a book and then Molly said night night. I made my way down stairs and did not hear a peep out of her.
I am so proud that even after all the changes to what routine we did have my lovely lady knows how to behave to help her mum.
Friday, 25 June 2010
June - I month on
The first few weeks in June fly by. After the initial dreadfulness of being home and the loneliest of being home but down stairs has warn off.
We are in much more of a routine and friends and visitors come and go and its fun. I can hear myself laughing and I like the sound of it.
I still struggle when other children are around, the noise for some reason really bothers me where it never did before and I have no patience for them other than for Molly.
Molly has been terrific. She has been passed from pillar to post for 2 months nearly and hardly seems to let it effect her. She had so much fun playing at peoples houses there for a while. Now sadly though she doesn't want to, and has decided to spend one day with mummy and 4 days in nursery. I guess she craves the structure nursery offers her.
I have lost over two and half stone since this all began. From the first day I was weighed by the surgeon in Eastbourne til now. I still have a way to go to lose another stone to get back to what I was when I had Molly.
Even being in the wheelchair to go out shopping is not so embarrassing and I look forward to Sundays - going to church in the morning and spending the afternoon in town. We go for cake in Starbucks and then buy some clothes or bits before wandering home.
We are in much more of a routine and friends and visitors come and go and its fun. I can hear myself laughing and I like the sound of it.
I still struggle when other children are around, the noise for some reason really bothers me where it never did before and I have no patience for them other than for Molly.
Molly has been terrific. She has been passed from pillar to post for 2 months nearly and hardly seems to let it effect her. She had so much fun playing at peoples houses there for a while. Now sadly though she doesn't want to, and has decided to spend one day with mummy and 4 days in nursery. I guess she craves the structure nursery offers her.
I have lost over two and half stone since this all began. From the first day I was weighed by the surgeon in Eastbourne til now. I still have a way to go to lose another stone to get back to what I was when I had Molly.
Even being in the wheelchair to go out shopping is not so embarrassing and I look forward to Sundays - going to church in the morning and spending the afternoon in town. We go for cake in Starbucks and then buy some clothes or bits before wandering home.
21 DPO - 29/30/31 st May
It has rained for the past few days and many days nights have merged into one
I am alone so much more that I am home that I can't cope with this feeling. I don't want people to pop in and leave me as I feel so much lonelier when they are gone.
I am wishing this week away and praying that by next week the withdrawal will have ended.
I am alone so much more that I am home that I can't cope with this feeling. I don't want people to pop in and leave me as I feel so much lonelier when they are gone.
I am wishing this week away and praying that by next week the withdrawal will have ended.
18 DPO - 28th May
I cry on everyone and anyone who calls or pops in to see me.
I can't control this and I am so frightened. I want to go back into hospital this can't be right this is not how it was meant to be. The pain is unbearable but this dispair and tears is too much.
When a good friend phones she recognises immediately the withdrawal symptoms not only from the pain killers but from being institutionalised. She takes control and phones the doctors for me who change my medication strength so the withdrawal is not so intense.
Its not even sad things that make me cry, its a disgusting self pity crying that I hate to allow flow. I dont want to let it out because the hurt feels like I should be punished.
This evening is much better, Andy and Molly sit and eat on my bed with me and molly falls asleep next to me. It is going to get better but I fear this is the hardest part now.
I can't control this and I am so frightened. I want to go back into hospital this can't be right this is not how it was meant to be. The pain is unbearable but this dispair and tears is too much.
When a good friend phones she recognises immediately the withdrawal symptoms not only from the pain killers but from being institutionalised. She takes control and phones the doctors for me who change my medication strength so the withdrawal is not so intense.
Its not even sad things that make me cry, its a disgusting self pity crying that I hate to allow flow. I dont want to let it out because the hurt feels like I should be punished.
This evening is much better, Andy and Molly sit and eat on my bed with me and molly falls asleep next to me. It is going to get better but I fear this is the hardest part now.
17 DPO - 27th May 2010
Okay I going home this is the big day we have been working towards.... excited?...no, happy?......no
What is wrong with me? Why am I crying about this?
I should want to go home but I am scared, tired and oh so suffering from the withdrawal.
When the discharge nurse asks what time I want the ambulance to arrive I cry! I could have had the ambulance transfer home after all. Why did no one tell me this? Andy is a few miles away from the hospital there is no way I am not going home in his car now!
The discharge nurse seems very patient with my tears and tantrums though. I go and give my special friend a hug and kiss and she promises to write to me. She seems so vulnerable and I don't want to leave her. I have some good friends here now and it feels like I have been asked to leave the holiday early. I can't quite explain it right.
When we get home I burst into tears, I warn Andy I can't control them and don't understand them. Everything feels like such an anti climax and a disappointment.
What is wrong with me? Why am I crying about this?
I should want to go home but I am scared, tired and oh so suffering from the withdrawal.
When the discharge nurse asks what time I want the ambulance to arrive I cry! I could have had the ambulance transfer home after all. Why did no one tell me this? Andy is a few miles away from the hospital there is no way I am not going home in his car now!
The discharge nurse seems very patient with my tears and tantrums though. I go and give my special friend a hug and kiss and she promises to write to me. She seems so vulnerable and I don't want to leave her. I have some good friends here now and it feels like I have been asked to leave the holiday early. I can't quite explain it right.
When we get home I burst into tears, I warn Andy I can't control them and don't understand them. Everything feels like such an anti climax and a disappointment.
16 DPO - 26th May 2010
I have been awake all night, literally.I went to the toilet at 4 and then fell over too which makes everything worse. My pelvis really hurts but I don't think from the fall particularly although my wrist really huts from that. I see the night doctor who suggests an a ray after ward rounds.
When the surgeon arrives I am terrified he will shout at me! Have I ruined his hard work? He is nice, and looks at my wrist too. He suspects I have fractured a small bone in the wrist and asks for a splint to be worn. At least the pain is not too much of a shock after what I have been through.
I am not going home today after all but definitely tomorrow.
I spend the entire afternoon crying on bed, I keep pulling the curtains round to hide me but some nurse or other keeps pulling them back. The day is like a bad comedy I can't even describe it.
I want Andy to come and get me now and take me away from this place.
When the surgeon arrives I am terrified he will shout at me! Have I ruined his hard work? He is nice, and looks at my wrist too. He suspects I have fractured a small bone in the wrist and asks for a splint to be worn. At least the pain is not too much of a shock after what I have been through.
I am not going home today after all but definitely tomorrow.
I spend the entire afternoon crying on bed, I keep pulling the curtains round to hide me but some nurse or other keeps pulling them back. The day is like a bad comedy I can't even describe it.
I want Andy to come and get me now and take me away from this place.
15 DPO - 25th May 2010
This morning we tackle some steps. I am not kidding you I stopped and cryed with the pain. this can't be right. People can't be expected to do this it seems so inhumane. This hurts so much how can it help? Why won't they just leave me alone? I don't feel ready I am scared. I can't deal with this pain at home alone what is happening?
And then it hits me, withdrawal?
I am being taken off the morphine whether I like it or not and its replaced with a lower dose opiate based pain relief that is given only 2 times a day. My mood dives and I know it.
This afternoon it gets worse. We get word that one of the patients moved out of our bay before I arrived into a private ward died in her room last night. The fear and the sadness is unbelievable. I never met this lady but her death seems so unfair. This is just an orthopaedic ward how can someone die?
To make it worse, my dear and beautiful friend is terrified now of her operation in the morning, And then the drama really begins.
It appears our little princess does not want to go home and her mother refuses to take her. They want her to stay in? I'm sorry what? why? Because they think they are being mistreated, she has not been here as long as some patients - ie me per chance? After the police are called and threaten to arrest them they sulk around for another hour and then quietly leave - no goodbyes or thank yous just waltz off thinking the world owes them a favour.
And then it hits me, withdrawal?
I am being taken off the morphine whether I like it or not and its replaced with a lower dose opiate based pain relief that is given only 2 times a day. My mood dives and I know it.
This afternoon it gets worse. We get word that one of the patients moved out of our bay before I arrived into a private ward died in her room last night. The fear and the sadness is unbelievable. I never met this lady but her death seems so unfair. This is just an orthopaedic ward how can someone die?
To make it worse, my dear and beautiful friend is terrified now of her operation in the morning, And then the drama really begins.
It appears our little princess does not want to go home and her mother refuses to take her. They want her to stay in? I'm sorry what? why? Because they think they are being mistreated, she has not been here as long as some patients - ie me per chance? After the police are called and threaten to arrest them they sulk around for another hour and then quietly leave - no goodbyes or thank yous just waltz off thinking the world owes them a favour.
14 DPO - 24th May 2010
The start of a new week and I am walking much better. I can get to the toilet with the physio with one stop. I have to try again later this afternoon and then can look at going home Wednesday. It has already been decided it wont be tomorrow.
But tomorrow I plan to walk back and forth to the toilet and prove I guess to myself that I can do this. I have come so far already I need to be able to focus on carrying on.
There is a lovely lady on the ward with a badly broken elbow who has been willing me on from her bed all last week. She is waiting to have surgery and has already been in a week the poor love. She has such a smile that is so beautiful and lights up the ward I feel my spirits lift after talking with her.
But tomorrow I plan to walk back and forth to the toilet and prove I guess to myself that I can do this. I have come so far already I need to be able to focus on carrying on.
There is a lovely lady on the ward with a badly broken elbow who has been willing me on from her bed all last week. She is waiting to have surgery and has already been in a week the poor love. She has such a smile that is so beautiful and lights up the ward I feel my spirits lift after talking with her.
13 DPO - 23rd May 2010
Urgh day!
I want to go home I miss Molly and Andy so much I am struggling to breath.
I spend a lot of time asleep - or pretending to sleep because I just can't face the chat of the patients and visitors.
Its days like today that I wish I was nearer home.
I want to go home I miss Molly and Andy so much I am struggling to breath.
I spend a lot of time asleep - or pretending to sleep because I just can't face the chat of the patients and visitors.
Its days like today that I wish I was nearer home.
12 DPO - 22nd May 2010
All day I am focused on Molly and Andy coming. I wear my nicest pyjamas and check I am looking as good as I can.
When they arrive you can here Molly chatting all the way up the corridor and its lovely. I can't believe I have lived without her for so long.
We go down for coffee again and this time sit outside in the sunshine, I know I will be home next week and I am feeling so excited about it.Molly chats and laughs and generally seems totally oblivious to what she has had to go through!
At tea time they go down to the cafe and leave me to have tea in the ward, as soon as they are gone I cry and want them back. What am I doing sitting in the ward, I could have gone with them. Andy phone is just going straight to voice mail I am gutted.
When they return I am so tired and sleepy. Molly and I lay on he bed for ages just chatting rubbish and playing eye spy. I hope this has all been worth this.
When they arrive you can here Molly chatting all the way up the corridor and its lovely. I can't believe I have lived without her for so long.
We go down for coffee again and this time sit outside in the sunshine, I know I will be home next week and I am feeling so excited about it.At tea time they go down to the cafe and leave me to have tea in the ward, as soon as they are gone I cry and want them back. What am I doing sitting in the ward, I could have gone with them. Andy phone is just going straight to voice mail I am gutted.
When they return I am so tired and sleepy. Molly and I lay on he bed for ages just chatting rubbish and playing eye spy. I hope this has all been worth this.
11 DPO - 21st May 2010
Today I manage to walk around the bed with no stops. I have had a rough couple of days and spend a lot of time after having done a little walk laying down with ice on my crotch! I asked the physio for some phallic shaped ice but it was not to be!
Now as it is Friday I am aiming to be home Tuesday! That seems a much more likely goal although still incredibly scary!
Now as it is Friday I am aiming to be home Tuesday! That seems a much more likely goal although still incredibly scary!
10 DPO - 20th May 2010
Oh what a night! Well the ibuprofen do help but there is no way I can give up the morphine yet.
I wait as long as I can all day before asking for my next dose.
I wait as long as I can all day before asking for my next dose.
9 DPO - 19th May 2010
This morning I am woken early as usual with the normal routine checks and told again that the INR result is still very poor they are considering a transfusion. I don't know what this means but as it is only a possibility I decide to ignore it on go with what I know.
Our lovely nurse was on last night and he gives out our pain meds before the next shift start at 8.30 so at least I an get up and wash as soon as I like rather than waiting for the nurses to have time to help after hand over.
This afternoon I meet the pain team who give me some other pain killers on top of what I am taking. Now there advice is to take more, stick to taking the morphine too and that getting on top of the pain first is more important then trying to get home. I feel caught between 2 sides because I am sure the surgical and physio team would prefer me to cut back on the pain relief?
I feel a little down about all the confusion.
Our lovely nurse was on last night and he gives out our pain meds before the next shift start at 8.30 so at least I an get up and wash as soon as I like rather than waiting for the nurses to have time to help after hand over.
This afternoon I meet the pain team who give me some other pain killers on top of what I am taking. Now there advice is to take more, stick to taking the morphine too and that getting on top of the pain first is more important then trying to get home. I feel caught between 2 sides because I am sure the surgical and physio team would prefer me to cut back on the pain relief?
I feel a little down about all the confusion.
8 DPO - 18th May 2010
Today is the start of a definite plan to get home. I need to be able to stay off the morphine for 24 hrs before they will let me home. So the first day I skip that voluntarily I know I have a high chance of being allowed out the next day. At the moment it feels like a goal that's so far away but one step at a time
I manage with the physio to walk the distance around my bed and get in from the other side. It takes 2 stops to achieve this which seems a lot but the plan is tomorrow it would take none. The improvement from day to day now should be much more noticeable if I can control the pain!
This evening we have a new patient on the ward. A young girl has come in for a hip operation. Her family are treating her like a real princess, I am not sure if I am jealous or something else but it is making queasy how much attention her mum is lavishing on her.
I manage with the physio to walk the distance around my bed and get in from the other side. It takes 2 stops to achieve this which seems a lot but the plan is tomorrow it would take none. The improvement from day to day now should be much more noticeable if I can control the pain!
This evening we have a new patient on the ward. A young girl has come in for a hip operation. Her family are treating her like a real princess, I am not sure if I am jealous or something else but it is making queasy how much attention her mum is lavishing on her.
Friday, 18 June 2010
7 DPO - 17th May 2010
Well its the beginning of a new week!
I am looking forward to seeing the physio as we are going to try and take a few steps.
I make sure to eat breakfast - slice of bread and jam and a strong cup of tea and shuffle into the chair for a wash! Whilst I am washing myself in marches the team of doctors! Thankfully my surgeons registrar offers to come back at a more appropriate time. I think the surgeon would have just carried on - well I suppose he has seen it all before. But he wasn't my surgeon so I was uncomfortable. A minute later they come back. They can't hide the fact they are concerned that I have not been able to walk yet. The nurse explains its not just the pain but the low blood pressure but they say not to worry. The plan is to aim to be home maybe Wednesday and under community physio and nurse instead.
After I am dressed my physios arrive to help me walk. I am able to stand with the frame but cant lift either leg. They are just sort of dragged along. The left leg is considerably weaker. After 3 steps my legs begin to shake, I am worried as it looks so shockingly like a much older person trying to walk. Especially given the fact I am using a frame. I collapse into the chair and can't hide the stinging tears in my eyes. The physio tells me I have done well, she explains my muscles would have started to deteriorate and I need to build up my strength. I don't get a gold star but she does draw a smiley face on the board above my bed which describes what care I require.
After this I need to wash and change again - it appears that having surgery on your pelvis requires the surgeon to move the bladder out of the way which can affect it temporarily during recovery. Another thing that I don't remember seeing mentioned anywhere! Embarrassing it may be but they are certainly used to it. A lovely HCA gathers up all my worn pj's and offers to wash and dry them for me.
I spend the rest of the day relaxing on the bed and chatting to the other patients. One of the ladies who has been here the whole time I have is going home with her new knee today. She was a fiesty bugger that the doctors did not argue with! She instructs the nurses and other patients to look after me and promises to phone to see how we all are.
Its strangely sad to see someone go. Even though its obviously good that she is well and on her way home, we have all started to really bond. We are all in similar situations but with vastly different lives.
I am looking forward to seeing the physio as we are going to try and take a few steps.
I make sure to eat breakfast - slice of bread and jam and a strong cup of tea and shuffle into the chair for a wash! Whilst I am washing myself in marches the team of doctors! Thankfully my surgeons registrar offers to come back at a more appropriate time. I think the surgeon would have just carried on - well I suppose he has seen it all before. But he wasn't my surgeon so I was uncomfortable. A minute later they come back. They can't hide the fact they are concerned that I have not been able to walk yet. The nurse explains its not just the pain but the low blood pressure but they say not to worry. The plan is to aim to be home maybe Wednesday and under community physio and nurse instead.
After I am dressed my physios arrive to help me walk. I am able to stand with the frame but cant lift either leg. They are just sort of dragged along. The left leg is considerably weaker. After 3 steps my legs begin to shake, I am worried as it looks so shockingly like a much older person trying to walk. Especially given the fact I am using a frame. I collapse into the chair and can't hide the stinging tears in my eyes. The physio tells me I have done well, she explains my muscles would have started to deteriorate and I need to build up my strength. I don't get a gold star but she does draw a smiley face on the board above my bed which describes what care I require.
After this I need to wash and change again - it appears that having surgery on your pelvis requires the surgeon to move the bladder out of the way which can affect it temporarily during recovery. Another thing that I don't remember seeing mentioned anywhere! Embarrassing it may be but they are certainly used to it. A lovely HCA gathers up all my worn pj's and offers to wash and dry them for me.
I spend the rest of the day relaxing on the bed and chatting to the other patients. One of the ladies who has been here the whole time I have is going home with her new knee today. She was a fiesty bugger that the doctors did not argue with! She instructs the nurses and other patients to look after me and promises to phone to see how we all are.
Its strangely sad to see someone go. Even though its obviously good that she is well and on her way home, we have all started to really bond. We are all in similar situations but with vastly different lives.
Thursday, 17 June 2010
6 DPO - 16th May 2010
Today I am tired, cranky sore and cranky - have I said cranky already?
I feel exhausted, I think yesterday took it out of me. It was such a long day and I didn't nap while the family were here. It was definitely worth it, but I am paying for it.
After a breakfast of the usual jam and bread, I push the boat out and have a coffee instead of a tea. There are no physios in today so it is up to me to make sure I move from bed to chair safely. I am not able to walk around or anything yet but I can shuffle into my chair.
After having a wash in the chair I start to feel really unwell. The nurse comes to check me and tells me I am hot, my BP is way too low and that my heart rate is now high. I don't understand what any of this means but am put back into bed.
Four hours later I waken. Thankfully the lovely lady that pushes the tea trolley has stopped at me bed and woken me. She tells me I have slept through lunch but would I like some tea and cake. And I would, and it is lovely. I feel much better - whether it was the sleep or the cake I don't know! But I am very grateful for the tea lady.
I feel exhausted, I think yesterday took it out of me. It was such a long day and I didn't nap while the family were here. It was definitely worth it, but I am paying for it.
After a breakfast of the usual jam and bread, I push the boat out and have a coffee instead of a tea. There are no physios in today so it is up to me to make sure I move from bed to chair safely. I am not able to walk around or anything yet but I can shuffle into my chair.
After having a wash in the chair I start to feel really unwell. The nurse comes to check me and tells me I am hot, my BP is way too low and that my heart rate is now high. I don't understand what any of this means but am put back into bed.
Four hours later I waken. Thankfully the lovely lady that pushes the tea trolley has stopped at me bed and woken me. She tells me I have slept through lunch but would I like some tea and cake. And I would, and it is lovely. I feel much better - whether it was the sleep or the cake I don't know! But I am very grateful for the tea lady.
Wednesday, 16 June 2010
5 DPO - 15th May 2010
Today is going to be a good day! I am definitely having the catheter removed and Molly and Andy will be visiting this afternoon.
At about 10.30 the nurse comes to finally remove my bag of wee. I am relieved (tee hee) that is doesn't hurt. They just deflate a little balloon that held it all in place and out comes the tube. Done. Would have been a whole lot easier if I wasn't having to give repeated directions to hubby on where to take Molly for her ballet lesson mind! Why don't they just go where you tell them and park where you tell them? I am giving directions from a car park that I have never even heard of! Anyway enough of my incredible multi tasking. Where's that shower so I can look super lovely for my visitors I really would like to wash my hair.
After lunch the shower is out of the question - I am too knackered. Unbelievable but sitting in chair can really wear you out you know.
Instead I chose to change in to some pyjamas instead - now I don't have to carry around that damn bag pj's are much easier to wear.
At 2.00 the family arrive and we enjoy a fabulous afternoon in the coffee shop and buy me a few snacks from the M&S shop. Molly is looking stunning and seems very happy and well looked after. Andy looks a little tired, and a little fed up. We talk about me coming home on maybe Tuesday/Wednesday but that doesn't seem to cheer him up. Maybe he is worried about looking after me at home?
By 7 its time for them to go, I am really exhausted and in quite a lot of pain. I have a few tears when they leave and try not to cry in front of them. I am literally choking though and feel like I have swallowed a golf ball.
I lay back and listen to some music for a while whilst I look through the many get well soon cards Molly has made me.
Overnight I get worse, the pain is unbearable and I am struggling to sleep. The nurses check our BP's again and again mine has dipped.. I am warned I may need a blood transfusion at some point and that they will monitor it for next few days. With another dose of morphine I am in the land of nod.
At about 10.30 the nurse comes to finally remove my bag of wee. I am relieved (tee hee) that is doesn't hurt. They just deflate a little balloon that held it all in place and out comes the tube. Done. Would have been a whole lot easier if I wasn't having to give repeated directions to hubby on where to take Molly for her ballet lesson mind! Why don't they just go where you tell them and park where you tell them? I am giving directions from a car park that I have never even heard of! Anyway enough of my incredible multi tasking. Where's that shower so I can look super lovely for my visitors I really would like to wash my hair.
After lunch the shower is out of the question - I am too knackered. Unbelievable but sitting in chair can really wear you out you know.
Instead I chose to change in to some pyjamas instead - now I don't have to carry around that damn bag pj's are much easier to wear.
At 2.00 the family arrive and we enjoy a fabulous afternoon in the coffee shop and buy me a few snacks from the M&S shop. Molly is looking stunning and seems very happy and well looked after. Andy looks a little tired, and a little fed up. We talk about me coming home on maybe Tuesday/Wednesday but that doesn't seem to cheer him up. Maybe he is worried about looking after me at home?
By 7 its time for them to go, I am really exhausted and in quite a lot of pain. I have a few tears when they leave and try not to cry in front of them. I am literally choking though and feel like I have swallowed a golf ball.
I lay back and listen to some music for a while whilst I look through the many get well soon cards Molly has made me.
Overnight I get worse, the pain is unbearable and I am struggling to sleep. The nurses check our BP's again and again mine has dipped.. I am warned I may need a blood transfusion at some point and that they will monitor it for next few days. With another dose of morphine I am in the land of nod.
Tuesday, 15 June 2010
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?
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?
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?3 DPO - 13th May 2010
Well oddly enough I am in ground hog day, I am again awoken far too early and nearly crying for morphine until a kind nurse arranges the morphine and a cup of tea! I am so grateful for that lady whoever you are.
At 8.00 along comes the breakfast trolley, I decline the porridge and try some bread and jam instead. My Molly would love this for breakfast, the thought of her today has me in tears. I think its because I was so expecting to see her last night. I listen back to the videos we recorded on the way to hospital on Monday - me and molly destroying some song on the radio! If I can work out how I shall add it on to here in the future.
By lunch time I am moved on to the orthopaedic ward. I am in bed 4. I listen as the nurses go past and refer to all the patients as their bed number - it feels a bit like prison - only the food is worse here.
My new bed is a dream! Honestly! I have an air mattress now that constantly moves ever so slightly to stop you getting sores. I also have a monkey bar over the bed which I will learn to use to sit up unaided and some bed bars that I am taught how to manoeuvre myself up the bed. What a difference being on this ward has made to me already.
The physio arrives late afternoon and I finally get from bed to chair. I ask her when I can have the catheter removed? Although its nice not worrying about getting to the loo on time it is getting rather annoying carrying a bag of wee with you!
I am told I have to 'open my bowels' first. I then have this discussion with a nurse who tells me I need to 'open my bowels' today. Well I don't know about you but I am not one for doing this on demand. Its funny how everyone acts like they are whispering this phrase - but actually draw more attention to it and end up shouting it instead. Now this o longer bothers me, the entire ward is in the same boat. Everyone has had lower limb surgery in here and are more than willing to put there opinion on the whole bowl movement subject. In the end I had no choice, after laughing along to one woman's tale of opening her bowels a teeny tiny nurse whirls in, whips the curtain shut and has me on my side suppositories inserted before I can even mutter bowels open. Job done. I am told she will be back in 30 minutes where she will wheel me to the toilet in time! She blooming better!
At 8.00 along comes the breakfast trolley, I decline the porridge and try some bread and jam instead. My Molly would love this for breakfast, the thought of her today has me in tears. I think its because I was so expecting to see her last night. I listen back to the videos we recorded on the way to hospital on Monday - me and molly destroying some song on the radio! If I can work out how I shall add it on to here in the future.
By lunch time I am moved on to the orthopaedic ward. I am in bed 4. I listen as the nurses go past and refer to all the patients as their bed number - it feels a bit like prison - only the food is worse here.
My new bed is a dream! Honestly! I have an air mattress now that constantly moves ever so slightly to stop you getting sores. I also have a monkey bar over the bed which I will learn to use to sit up unaided and some bed bars that I am taught how to manoeuvre myself up the bed. What a difference being on this ward has made to me already.
The physio arrives late afternoon and I finally get from bed to chair. I ask her when I can have the catheter removed? Although its nice not worrying about getting to the loo on time it is getting rather annoying carrying a bag of wee with you!
I am told I have to 'open my bowels' first. I then have this discussion with a nurse who tells me I need to 'open my bowels' today. Well I don't know about you but I am not one for doing this on demand. Its funny how everyone acts like they are whispering this phrase - but actually draw more attention to it and end up shouting it instead. Now this o longer bothers me, the entire ward is in the same boat. Everyone has had lower limb surgery in here and are more than willing to put there opinion on the whole bowl movement subject. In the end I had no choice, after laughing along to one woman's tale of opening her bowels a teeny tiny nurse whirls in, whips the curtain shut and has me on my side suppositories inserted before I can even mutter bowels open. Job done. I am told she will be back in 30 minutes where she will wheel me to the toilet in time! She blooming better!
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.
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. 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.
1 DPO - 11th May 2010
I day post operation!
Crikey why don't they let you sleep. At 6.00 I am awoken again for more BP checks and temperature checks. I am still on the oxygen but they have thankfully removed the mask and given the little thing that pokes up your nose.
During the night when they do these checks I normally get more pain relief and can go back to sleep but at 6.00am it appears everyone wakes up. Which is rather foolish as breakfast is another 2 hours away what is everyone going to do?
I switch on my TV and wonder if I can face some toast. At 8.00am I discover that even if I could eat I can't because toast is not on the menu,instead I am given some porridge. 2 mouth fulls is enough and then I feel sick.
The physio arrives mid morning with a pair of crutches, if I could I would laugh. There is no way she is getting me on them! Instead we try to work out a way to get me to sit up. Its harder then you would think!
Eventually I am helped on to my side and half lifted into a seating position, as she moves my legs off the bed the pain is unbearable and I promptly part with the 2 mouth fulls of porridge. It looks a lot more splattered on the floor.
I apologise but I get the impression that's not the worst bodily fluid that's missed her shoes.
I am allowed to lay back down and informed that I feel sick because of the drugs and the fact I have been lying flat for so long.
The rest of the day passes in a blur. By tea time I am quite ready for some food. Until it arrives, and I decide that maybe I will give it a miss until tomorrow. After all its only been one day!
Crikey why don't they let you sleep. At 6.00 I am awoken again for more BP checks and temperature checks. I am still on the oxygen but they have thankfully removed the mask and given the little thing that pokes up your nose.
During the night when they do these checks I normally get more pain relief and can go back to sleep but at 6.00am it appears everyone wakes up. Which is rather foolish as breakfast is another 2 hours away what is everyone going to do?
I switch on my TV and wonder if I can face some toast. At 8.00am I discover that even if I could eat I can't because toast is not on the menu,instead I am given some porridge. 2 mouth fulls is enough and then I feel sick.
The physio arrives mid morning with a pair of crutches, if I could I would laugh. There is no way she is getting me on them! Instead we try to work out a way to get me to sit up. Its harder then you would think!
Eventually I am helped on to my side and half lifted into a seating position, as she moves my legs off the bed the pain is unbearable and I promptly part with the 2 mouth fulls of porridge. It looks a lot more splattered on the floor.
I apologise but I get the impression that's not the worst bodily fluid that's missed her shoes.
I am allowed to lay back down and informed that I feel sick because of the drugs and the fact I have been lying flat for so long.
The rest of the day passes in a blur. By tea time I am quite ready for some food. Until it arrives, and I decide that maybe I will give it a miss until tomorrow. After all its only been one day!
Friday, 4 June 2010
Day 0 - Day of the operation
I was so so tired this morning. I woke up at 4, (although pretty sure I had not actually been to sleep at all) and quietly dressed and checked my many lists of things to do, things to pack and lists for Andy and Molly to do whilst I was away.
Once the car was loaded and warmed Andy scooped Molly up and into her car seat too. The plan was for her to stay asleep until we reached the hospital. However she was suddenly wide awake before we got off the drive and I was secretly pleased for the distraction.
Once at the hospital we parked and changed Molly out of pj's and into some clothes. We made our way slowly to the surgical admissions lounge and waited with all the others for the doors to open at 7
Thankfully I was seen rather quickly, I was assessed by the surgical team and the surgeons registrar and we were all happy to proceed. Later the anaesthetist came over and said I would be taken down in an hour or so. I was changed into a hospital gown and some rather fetching TED stockings to prevent DVT.
Molly and Andy spent most of the morning slipping in and out of the lounge to eat - they were not allowed to eat in front of people waiting for surgery.
When I said goodbye to Molly I was scared, I tried to take a memory picture of exactly how she looked, the smell of her hair and skin and the sound of her voice. I had to turn away before she saw me cry. Andy took control and led her away.
Waiting outside the operating theatre I was so tempted to run. But realising that I couldn't and that was part of the reason I was there in the first place I stayed put and said a few silent prayers asking for strength.
Once inside a small room and on a small table I was given a not so small cannula in the back of my hand, the lady talked to me as she put some liquid through the cannula - to be honest I thought she was washing it out, she never said this was it. That was the last thing I remember!
Five hours later in the recovery room I remember a lovely nurse talking to me, telling me it was all over and that the surgeon was really pleased with how the operation had went. All I could see and hear were bleeping machines, the whir of the oxygen - (why was I wearing an oxygen mask?) and tubes and leads coming out of both hands now.
A little later I was wheeled up to the surgical ward, I could see Molly and Andy on chairs outside, I was so happy to see and hear them chatting away. Once at the ward I was asked to move from one bed to another. I was dumbstruck, I knew I was not supposed to move. They kept insisting I needed to move, I had barely the strength to speak and then they finally asked what operation I had. I could have cried, this was not how it was meant to be! After trying to shuffle and crying with pain and effort they finally pulled back the covers and I guess realised this was not up to me to get from one bed to another. A sliding board was eventually found and I was tucked up in bed.
Andy and Molly then came in and all the anger then was forgotten, I was so happy to see them. Molly looked a little worried so we tried to reassure her that everything was fine and mummy was okay. After some small talk and Andy sorting out my TV for me they were off. I felt a little sad to be left behind but the morphine soon took care of that. It had been a long old day and I was ready to catch up on some serious sleep.
Unfortunately I was woken every hour to have my blood pressure checked, given more medication or to have the catheter emptied. It was going to take a while to catch up on that sleep!
Once the car was loaded and warmed Andy scooped Molly up and into her car seat too. The plan was for her to stay asleep until we reached the hospital. However she was suddenly wide awake before we got off the drive and I was secretly pleased for the distraction.
Once at the hospital we parked and changed Molly out of pj's and into some clothes. We made our way slowly to the surgical admissions lounge and waited with all the others for the doors to open at 7
Thankfully I was seen rather quickly, I was assessed by the surgical team and the surgeons registrar and we were all happy to proceed. Later the anaesthetist came over and said I would be taken down in an hour or so. I was changed into a hospital gown and some rather fetching TED stockings to prevent DVT.
Molly and Andy spent most of the morning slipping in and out of the lounge to eat - they were not allowed to eat in front of people waiting for surgery.
When I said goodbye to Molly I was scared, I tried to take a memory picture of exactly how she looked, the smell of her hair and skin and the sound of her voice. I had to turn away before she saw me cry. Andy took control and led her away.
Waiting outside the operating theatre I was so tempted to run. But realising that I couldn't and that was part of the reason I was there in the first place I stayed put and said a few silent prayers asking for strength.
Once inside a small room and on a small table I was given a not so small cannula in the back of my hand, the lady talked to me as she put some liquid through the cannula - to be honest I thought she was washing it out, she never said this was it. That was the last thing I remember!
Five hours later in the recovery room I remember a lovely nurse talking to me, telling me it was all over and that the surgeon was really pleased with how the operation had went. All I could see and hear were bleeping machines, the whir of the oxygen - (why was I wearing an oxygen mask?) and tubes and leads coming out of both hands now.
A little later I was wheeled up to the surgical ward, I could see Molly and Andy on chairs outside, I was so happy to see and hear them chatting away. Once at the ward I was asked to move from one bed to another. I was dumbstruck, I knew I was not supposed to move. They kept insisting I needed to move, I had barely the strength to speak and then they finally asked what operation I had. I could have cried, this was not how it was meant to be! After trying to shuffle and crying with pain and effort they finally pulled back the covers and I guess realised this was not up to me to get from one bed to another. A sliding board was eventually found and I was tucked up in bed.
Andy and Molly then came in and all the anger then was forgotten, I was so happy to see them. Molly looked a little worried so we tried to reassure her that everything was fine and mummy was okay. After some small talk and Andy sorting out my TV for me they were off. I felt a little sad to be left behind but the morphine soon took care of that. It had been a long old day and I was ready to catch up on some serious sleep.
Unfortunately I was woken every hour to have my blood pressure checked, given more medication or to have the catheter emptied. It was going to take a while to catch up on that sleep!
Monday, 10 May 2010
My BIG Operation Today
This is a brief update from Sarah's Husband...
Sarah and her operation today, Surgeon said it all went well and to plan - now she just has the recovery!
I am very proud of her.
More news to follow...
Sarah and her operation today, Surgeon said it all went well and to plan - now she just has the recovery!
I am very proud of her.
More news to follow...
Sunday, 9 May 2010
Faith and Strength
One more sleep
Today I woke early and finished arranging my bags - packing and repacking mostly!
At church our lovely minister did a healing service for me and said a lovely prayer. It has given me strength to believe in my faith.
I did however shed a few tears. It was lovely that so many people are thinking of me and praying for me and generally just wishing me well. These are friends that I have only known for 15 months and yet the friendship is so strong that I am happy to leaving my daughter in their care where and when needed. Molly will have an absolute blast over the next few weeks playing with all her friends everyday, she is even asking if she can have a sleep over at several peoples houses already, and is keen to stay at the ministers house!
After church we quickly ran around the shops - having realised that the pj's that I previously bought are not exactly practical considering the operation will be on my pelvis! So 2 old lady nighties later and a rather sweet dressing gown I am pretty all set to go.
This afternoon we are off the farm for some quality family time where we don't have to think or talk about tomorrow.
Now doubt when we return I shall repack my bag, and decide on what else I want to squeeze in there.
Today I woke early and finished arranging my bags - packing and repacking mostly!
At church our lovely minister did a healing service for me and said a lovely prayer. It has given me strength to believe in my faith.
I did however shed a few tears. It was lovely that so many people are thinking of me and praying for me and generally just wishing me well. These are friends that I have only known for 15 months and yet the friendship is so strong that I am happy to leaving my daughter in their care where and when needed. Molly will have an absolute blast over the next few weeks playing with all her friends everyday, she is even asking if she can have a sleep over at several peoples houses already, and is keen to stay at the ministers house!
After church we quickly ran around the shops - having realised that the pj's that I previously bought are not exactly practical considering the operation will be on my pelvis! So 2 old lady nighties later and a rather sweet dressing gown I am pretty all set to go.
This afternoon we are off the farm for some quality family time where we don't have to think or talk about tomorrow.
Now doubt when we return I shall repack my bag, and decide on what else I want to squeeze in there.
Saturday, 8 May 2010
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.
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.
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.
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