Hints and tips for coping with PGP

A reminder for hints and tips as I realise this blog needs a bit of updating

 

• Keep your knees together as much as you can - this includes sitting on the toilet and turning over in bed
• Where shiny/silky pj's to bed to help slip when you turn over.
• Or lay a towel under you (width ways) in bed, when you need to roll over pull up on one end of the towel to lift yourself over
• When going from sitting to standing or vice versa clench you bum muscles as much as you can and concentrate on using them.
• Always do your pelvic floors. Try and do it every time you wash your hands and use a pc. You need to get into the habit of doing them
• Spend some time of the day crawling around on the floor - slowly and carefully concentrating on using stomach and bum muscles as you move.
• Take short steps
• Concentrate on going upstairs and down - a lot of people find it easier to step up sideways
• Don't carry anything heavy - including your toddlers - its not going to help and can make it so much worse in the long run. General rule is 10lb is the maximum weight to lug around.
• Absolutely no hoovering or pushing shopping trolleys. All the force is pushed through your pubic bone which is not good! Get help with the house work and order food online if you cant rely on someone to do it. Most supermarkets have free delivery on less popular days - Tuesdays and Wednesdays if you order over certain amount. Its worth doing!

I will update this as I get more. Please comment to add your tips to this post!!

 

Happy News!

Well thought I should share some happy news! I am now 1 year on from surgery and currently 3 1/2 months pregnant. Hooray! One of my main goals has been achieved.
I am still walking unaided - albeit not very far.
I have a check up with my surgeon on Wednesday - I am not sure how happy he will be about me being pregnant - we had been told to wait til May to try.
So far some of the old SPD pain has returned, I am already very sore at night time and turning over in bed is a bit of a mission. I am going to be more careful this time on what advice I take. I shall not be engaging in stretchy yoga or aqua aerobics contrary to what every midwife tells me!
If anyone out there has some new tips and advice on coping with SPD in another pregnancy please get in touch, there are plenty of ladies out there who want advice too.
As for the success of the operation - I had hoped it would prevent the SPD returning so aggressively in pregnancy - especially this early. However, if it gets me the healthy little baby we all want then it was absolutely worth it. I know I wouldn't be pregnant now if I hadn't had it!

One year on

Wow!

I can't believe it but I have finally got rid of the crutches this week. I have been able to walk my daughter to and from school every day.  Okay so its only 5 minutes and I do stop and rest but what a huge milestone. I was beginning to think I was permanently disabled but now I feel like maybe I will keep on improving after all.
I go back to see the surgeon in a few weeks time - I am so looking forward to walking in there!
I am even returning the wheel chair next week to the lovely lovely Red Cross who have let me have it for so long.  I am so very grateful to them.
I am still off all the pain killers too.
Oh happy days
xx

Do you have to pass an exam to become a gp?

Went to the doctors today with stomach ache. Was offered pain relief. Urm I am in withdrawal? Why would you give me the same darn pain killers???

New year update

Well its a been a while and things are slowly moving forward.
My biggest goal at the moment is come off the pain killers. I am fed up of being addicted to tramadol. I always took more than I was prescribed - telling myself I had been on them so long I had built up a tolerance. The withdrawal is slow torture. I reduce by one tablet a week and instead of the dramatic cold turkey I went through last summer its a more dragged out but slightly manageable process.

The physical withdrawal symptoms are stomach cramps, nausea, diarrhoea,  night terrors and cold sweats. This has been going on for a few months now as I slowly reduce the amounts of medication. The emotional effects are much harder to deal with. The anxiety is incredible and I dont how to control it. I have to visit my friend to get me through those days. You definitely need support to come through this. I have a very good friend who I ring and see daily to get me over the anxious hours, the sad hours, the lonely hours and the angry hours. I couldn't have coped without her.

As each tablet is dropped the pain has also increased. Not just along the pubic bone but around the curve in my spine and the across the left SI joints.
I am determined to continue, I would rather the pain now then the medication. Who knows, maybe I can manage this level of pain. Its certainly easier than it was pre op.
My only other real discomfort is lack of sleep, if I manage to drop off to sleep I often wake with nightmares or I stay awake at all hours because I cant get comfortable. I am shattered!

One step back

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?

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 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.

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.

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!

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.