Yesterday was such a difficult day for me because I felt pretty tired when I woke up, and had a ‘morphine headache’ which wasn’t great. However then all my OT stuff arrived and I was so excited by the chance to get my life back. I posted on MMs with the title ‘My house resembles a care home’ and everyone was so happy for me which was lovely.

Then Eds and I went to have a bath with my new bath lift. It was broken! I was furious as I was so looking forward to having a soak without having to ask for help.

Then I came down and opened my laptop - I was grinning as I had managed to set up our new BT vision box upstairs on my own! So I was shocked when a friend had left a hurtful comment after my post saying I was causing offence by my wording and it was a ’slap in the face’. This friend knew me well and I thought she would understand that a) I would never intentionally cause offence and if she had spoken to me privately and said she was unhappy I could easily have changed the title and b) because my home is a care home and I dont see why just because I believe that it would become offence to others.

Another friend said she agreed so I decided to move the post if I was upsetting people. However the managers of the site S and K both asked me to move it back. They both told me that they agreed with me, that my response was absolutely ok, and that I shouldnt back away from the site, which was my plan. T spotted me curled up on the sofa crying my eyes out and asked what was wrong so I explained and he said to forget it and move on.

I have decided now to keep my online friendships to a minimum. I have some truly wonderful friends who I care deeply about and who care deeply about me. I thought the friendships I had online were also special but I think a lot can be influenced by others online and its difficult to know who the real person is. I wont back away from the friends online who I care for and who seem to care for me but I will no longer get so close or be so honest. I cant bear to get hurt like this again.

I agree that some of this must be my fault as these things are always two way - but I am being given all the blame for this because after months of trying I have been told I havent done enough. So I walked away and now I am the one throwing it all away. I feel I cant win so i conceed defeat and I will try not to make these mistakes again.

I have been told that people are ‘worried about me’. Im not sure what this is in connection with. I have depression, but that is being treated, my GP is happy with my progress, and its her I listen to above others. Ive been told I shouldnt be drinking, but again that just goes to show how little people know me as I hardly drink at all any more, even at parties. Again my GP is happy for me to know my own limits if I do drink.

So what is left? OK I am not happy with life at the moment, its a constant struggle, but I’m happier than I have been in a while. I am not going to sacrifice myself for others and sit up crying because someone decides to be hurtful.

Right now I am going to jump forward to present day. I will go back and fill in the blanks over the next few days.

I am now waiting for pelvic fusion surgery. Its been a scary step but I have tried everything else. I have asked for a referal up to Leeds General Infirmary to see a Professor P Giannoudis who is a specialist in Pelvic surgery and have written papers on the subject. I have also read an article by him in the Daily Mail where he has successfully operated on a patient with SPD.

I am currently going through the incredibly depressing process of registering myself disabled. I am claiming DLA, Incapacity Benefit, Blue Parking Badge, getting help from Wheelchair Servies, Occupational Therapy, and so on.

OT have just been round for a house assesment and I have been impressed with their helpfulness so far.

She is going to put an extra ‘box’ step by the front door so I have 2 smaller steps to get up instead of just one. She is refering me to wheelchair services so I can get an NHS wheelchair - but I am going to contact Red Cross about borrowing one in the mean time.

Short term she is providing me with a bath lift so I can get into and out of the bath without help and assistance which should help the pain in my hips (I hope). Long term she is going to get quotes to have a walk in shower put into the en-suite so I dont have to step up to get in the shower. I also will get a free standing stool so I can sit while showering.

As for the stairs, she wanted me to go upstairs with her to show her the bedroom and bathrooms so she saw first hand my attempts and getting me up and down stairs (consists of me sitting on the steps, moving me legs up to the step below me in one movement so they dont seperate then using my arms to lift my body to the next step - then repeat. - The osteoarthritis in my wrist and the pain I feel when ‘landing’ shooting through my groin and coccyx means this is a difficult way of coping and I normally rely on my husband to help me. She said I definately need a stairlift, I cannot carry on as I am - she cant see an issue with a stair lift, she is going to get two companies out to quote for them, then she has to apply for a grant to fit it. She is going to get it all pushed forward asap so it is as short a wait as possible, she understands my needs.

She also suggested once I had the DLA money coming in to consider getting a carer or cleaner to come in and help me out occassionally so I’ll have to price that up once I have the DLA money. She thinks I should easily get higher mobilty and middle care considering my obvious needs. Despite me coming up with techniques to help me cope at the moment and the fact I struggle to ask for help.

Yesterday I went to the GP and asked  to be taken off Morphine as I am not happy with the person I have become while taking it. It does little to manage my pain, even at 60mg a day plus around 20mg for breakthrough pain.T and I had a row at the weekend, we were both to blame but I slapped him, which is not at all like me, DH grabbed me and threw me away from him, because he knew his temper would have made him hit me and he didnt want that. He walked out and I went after him, I ended up collapsing and am now covered in bruises, on my shoulder from where he grabbed me and my legs, higs and arms from falling. We had a very long talk afterwards where we both cried and held each other and promised each other that we would help ourselves and each other.

I knew it was the morphine that made me flip - I just dont act like that - I am so non violent following a previous abusive relationship and the fact that I flipped and lashed out horrified me. I told my GP about all this in tears and she agreed to look at alternatives.

I am now on Fentanyl patches. They are equivilent to 81times the dose of morphine but have differnet side effects so should help with my bad mood swings. The patches last 72 hours. 

I hope they help manage my mood swings and get me back to normal.

I have someone coming out on Thursday to help go through my

Well the SPD is completely taking over my life at the moment and I have decided if I can write everything down here then it will make it easier for me to get through it and know what I have coming and where I have been. I am also hoping it will help others to know they are not alone and treatments are out there.

So I am going to start this by adding my birth story so you can read the start - I will then start adding what happened next and where I am now.

If you have SPD - keep smiling and keep fighting - the help is out there if you know where to look. And you are not alone!

My Birth Story  - Meeting my little man!

I was shocked but excited to discover I was pregnant, I had always been such a maternal person.  I was convinced my pregnancy would be a breeze.  I eagerly awaited my growing bump and struggled not to let on to anyone but close family that I was pregnant.  Unfortunately I suffered from awful morning sickness which lasted all day so work cottoned on quite fast.

At around 8 weeks I started to get pains on one side of my abdomen and was sent to the hospital for a scan with a suspected ectopic pregnancy.  Thankfully everything was alright, seeing my babys’ heartbeat made it all seem so real.  It was suggested I had a UTI and I was prescribed a course of antibiotics, which seemed to help and the pain eased.  At around 12 weeks I started to get abdominal pains again.  It was always put down to a UTI although my urine tests were coming back negative.  I was having trouble sleeping because of the pain but no one seemed to have any answers.  On top of it all my blood pressure dipped quite low and I was regularly fainting.  My GP signed me off work.

Eventually someone seemed to have an answer to why I was in so much pain.  I was told I had round ligament pain which was caused by the ligaments stretching to make room for my growing baby; unfortunately there was nothing they could do.  I learnt to live with the pain but then it started to change, I was getting sharp stabbing pains in my groin and it was painful using the stairs.  I made an appointment with my GP I never made it to the appointment because I woke up 2 days later in agony.  I could hardly separate my legs and could not get out of bed, using the stairs was impossible.  I phoned my partner who called the doctor for me and came home.  The GP came around to see me and examined me.  He explained it was a problem with my pelvis and was unlikely to improve throughout the pregnancy; I needed to see a consultant.

The next day I went to the hospital so see the consultant.  I was walking very slowly, practically shuffling.  I was called through and an SHO examined me (I never saw the consultant).  He poked my pelvis so hard I nearly screamed and asked where the pain was.  I explained my groin and hips were agony, I had some pain down my thighs when I walked and slight lower back pain.  He told me it was a problem with the ligaments from my spine and said I would need to see a physiotherapist; I would receive an appointment in a few weeks.  I was shocked and explained that I could not walk, I needed something sooner.  Eventually he agreed to put me through as an urgent referral.  I took the referral to the Physiotherapist department myself to speed the process up and on the way I read it.  I was shocked to discover he had ignored what I had said and had altered my symptoms to fit his diagnoses.  He had stated the pain was in my back and thighs and had not mentioned my groin or hips.

Thankfully, the physiotherapists were fantastic.  The first person to look at me knew straight away what was wrong from the way I walked before I even opened my mouth.  She fitted me with a pelvic belt and made an appointment for me to see a specialist.  She also gave me information on Symphysis Pubis Dysfunction; at last my condition had a name.

I read up on SPD and discovered round ligament pain can often lead onto SPD.  I had been lucky my GP had recognised the signs, as it is often put down to being ‘one of the pregnancy aches and pains’ so ignored.  I found out SPD is caused by the production of the hormone Relaxin in the body, which softens the ligaments in your pelvis in order to make your babys’ passage through your pelvis as easy as possible.  With SPD it causes the ligaments to soften too much, which allows for increased movement in the pelvis.  This can lead to a great deal of pain and discomfort.

When I saw Mo, my physiotherapist, she was surprised at how bad my case of SPD was.  She manipulated my pelvis to make it more comfortable and gave me some exercises.  She also gave me some crutches and warned me that some women end up in a wheelchair.  I was determined this was not going to happen.Â
I had already been signed off work so I was now stuck at home every day.  Walking was getting more and more painful and I was in agony trying to turn over in bed.  To get in the car I had to sit down and then swing my legs in together and vice versa to get out.  If I forgot and opened my legs it was agony.  It took me 5 minutes at least just to get up the stairs, especially at night when the pain was at its worse.  My partner tried to help but there was not much he could do.  Some nights he would go out to the kitchen or the garage just so he could not hear me sobbing as he felt bad that he could not help me.  I wore satin pyjamas to bed as it made it easier to roll over but it was still agony.

One night I got fed up with it all, I was going out for a meal with my girlfriends and went out without my crutches, I was fed up with it taking over my life.  That night I did not sleep, I just sat on the edge of the bed, exhausted but unable to lie down with the excruciating pain.

After weeks of agony I caved in.  I contacted the Red Cross and arranged to borrow a wheelchair until the end of my pregnancy.  I felt low and deflated but I refused to let it overshadow my pregnancy.  With every kick I smiled, even when the kicks were aimed at my pelvis and it felt as though I was tearing in two.

My first time out in the wheelchair was around the supermarket.  Tony pushed the trolley and I wheeled myself, I was very conscious of the way people looked at me, especially when they spotted my bump.  It was as though someone in a wheelchair could not be pregnant.  I had been in the shop less than 2 minutes when someone first cut in front of me.  I assumed they had not seen me, then it happened more and more and I realised people were intentionally doing it because they did not want to get stuck behind a wheelchair user.  Tony was getting some vegetables so I stopped for a second at the side, to rest my arms.  Suddenly I felt the wheelchair moving, someone had physically moved me to get to what they wanted.  They obviously felt asking me to move would be too difficult!  I was livid; I got the car keys from Tony and left the shop, tears stinging my eyes.

After that I was nervous about using the wheelchair and used my crutches again but soon it was impossible to go out unless I used the wheelchair.  With the help of Tony I grew in confidence and although people still looked down at me and cut me up, I did not care.  My mum took me to Peterborough to do our last bits of baby shopping and we laughed about her pushing me about again, as she had when I had been a baby myself.

Unfortunately, the SPD was now so bad I could not use the stairs at all, so every night Tony made me up the sofa bed for me before going up to bed.  I missed him so much and hated what was happening to me.  I called the hospital one morning when the pain was too much and they took me in, they examined me and prescribed some stronger painkillers, they hardly touched the pain.  I felt terrible taking them, worried about what harm I was doing to my unborn child.

About a week later I woke up screaming in pain.  I was due to see the midwife that day (at home) but I called the hospital.  They told me there was nothing they could do for me.  I called Zoe (my midwife) and she said she would sort it out.  When she arrived at my house she told me to pack an overnight bag and get myself to the hospital as she had called them and told them they had to admit me.

I called my mum who left work and came to pick me up.  She took me to the hospital and I was prescribed diamorphine injections.  I felt terrible but they assured me the baby would be monitored and I was in so much pain I did not argue.  That night I felt slightly better but by the morning I was back to being in agony.  I was moved to a bed closer to the door so I would be closer to the toilet as walking was becoming increasingly difficult.  I was put onto 2 doses of morphine a day with extra painkillers in between, on the 3rd day I got a lot worse.  Tony was with me and getting ready to leave for the night, I lifted myself forward to say goodnight and my pelvis locked.  I was in absolute agony, screaming and crying in pain.  Tony held me and called a midwife who tried to move me, increasing the pain ten fold.  Eventually, the pain subsided, they gave me some painkillers but from then on I could not bare weight on my legs at all.  I had to be helped into my wheelchair to go to the loo and helped in the shower.  One night the midwife made me use a bed pan instead of taking me to the toilet.  I felt like I was not a person anymore.  I started pushing to be induced and I wanted to know if I was going to be capable of giving birth.  They assured me I would be fine, started a course of prostaglandin gel to soften my cervix and induce labour.  I needed gas and air just to open my legs far enough for the gel to be inserted.

It went nowhere, the gel did nothing, and in the mean time I was pushing more and more morphine on my unborn baby.  I was desperate for a natural birth but it was all getting too much, I asked for a caesarean and was told if I had not gone into labour in 2 days they would.  That night it was decided for me when the foetal heart rate rose.  They monitored me all night and at 2am took me through to the labour ward.  I was monitored again but it had calmed down so they decided to check again in the morning.

I was exhausted after a week with no sleep; the consultant suggested I might have a busy day tomorrow so she prescribed sleeping pills.  That combined with the fact that for the first time in a week I was not in a room with 4 snoring pregnant women, I slept.

The following morning I spoke to a midwife who said that whatever happened I would not be in until the afternoon.  My mum had called and been told I had been sent through to the labour ward and was panicking so I called her and told her I would speak to her later.  She spoke to Tony and he went to work.

A monitor was attached to my tummy and the heart rate was monitored again.  I could tell it wasn’t right straight away and after 20 minutes someone came through and told me I was having a caesarean straight away and started prepping me.  Someone told me Tony had been called and told to rush back from work; he had only just walked in the door and worked an hour away.  The next bit is all a blur as I was taken through to the theatre.  Thankfully my friends mum was working there and she helped put me at ease.  I was given a spinal block and had a drip put in my hand then a catheter inserted.  I was panicking Tony would not get there, then someone came in and told me he had arrived, the next thing I knew he was there next to me, looking very sexy in his scrubs.  All I could think about was that I had been told because of the morphine the baby would be floppy and might need resuscitation.  The midwife asked if we had a preference and Tony admitted he wanted a little boy.  The next thing I knew there was crying and the midwife said ‘it’s a boy’ and Tony grinned as they lifted up my little boy to show me.  He had thick dark hair which really shocked me and he was perfect.  They asked if we had a name and we both said Edward so it was decided then and there.

I breastfed Edward as soon as I was back on recovery, he then slept until 8pm.  I was on a high and felt on top of the world, although I was still in pain from my caesarean scar, I needed morphine and painkillers still.  We had a good night, although Edward was hungry and did not want to sleep much I managed without having to ask for help.
The following morning I had the catheter and drip removed, with the aid of my crutches I walked very slowly down the corridor to the shower.  It was painful and stiff but I felt great.  Tony arrived at 10am; we sat on the side of the bed.  I was holding Edward and I saw a friend I had made on another ward come in.  I got up and walked over to her without the aid of my crutches, I did not even realise I had done it until Tony pointed it out.  I was amazed, it did not even hurt.

I carried on recovering well.  My physiotherapist was amased when she walked in to see me, not only to find me with a wonderful baby boy but also sitting cross legged on the bed.  The consultants then admitted they were worried about how I would feel after Edward was born; all were stunned by my recovery. I went home 3 days after Edward we born.

Apart from the odd twinge my hips are now completely back to normal.  I can walk easily, even long distance.

I am thoroughly enjoying being a mum to Edward, he is an absolute joy and it was worth everything I went through just to hold my baby boy.

(My story told until Edward was 6 weeks old)

Well its a slow and steady process but the happy me is returning.

My injections are starting to work, the pain is lessening and I can walk further everyday. I’m starting to feel more positive about life and am determined to enjoy this summer with my family! I want to get out and about as much as I can, use the bike, swim, exercise, use my body now I can - I am determined to make the most of being able to get out and about am carry on my 2008 resolution to enjoy life! I had a blip but I’m back and ready to rock!

There are many things that could bring me down. I am still not over my need for another baby - and everyone around me is announcing they are TTC, going to TTC, are pregnant, or have new babies. I desperately want another baby but for many reasons I have to put my family first and cannot really consider it. My marriage isnt perfect, but I am going to work on that and give Edward the family life he deserves.

My tiny baby boy is 3 years old tomorrow and I dont know where this lasy few years went. He is a wonderful child and I am so proud of him. I love him so much and he is what my life is about.

I am going to enjoy the rest of this year! hurrah!

I had my injections yesterday and it was bittersweet. My consultant informed me that a mistake hadnt been made with my appointments - its a long story but basically I’ll be waiting 4 months every time which means the big risk of going though that much pain again in 3 months is quite high.

The pain following the injections is awful. As well as the normal pains assosiated with SPD and the severe pain in my right hip I now have a feeling like large needles right into my groin. She has localised the injections all closer to the Symphysis Pubis Joint this time and it hurts just to move, even clothes touching my groin are hurting me beyond belief.

I am feeling very low. I have had very little sleep - I gave up at 3am and just sat in bed. I am on morphine every 2 hours which alters my mood and makes me very short tempers and very jumpy. Add that to the pain and life is very difficult today. My friend came over to help and it all fell apart and now she is feeling that I dont appriciate her. I just couldnt cope with the kids bickering and Eds was getting a raw deal and I felt awful with the pain.

I knew it was going to be bad but its so difficult to prepare for. Everyone keeps telling me not to worry as it will be over in a few days but thats so much easier to say when you arent in so much pain. The morphine isnt touching it and I am close to tears all the time.

I cant wait to go back to being the happy me again!

This month has been awful.

My prolotherapy injections were missed - due 12 weeks from last ones which would have been 7th March they are actually happening on Thursday 3rd April. A day before they were due my hips went. I felt a sharp pain in my groin and my right hip tighten at around 5pm. Stupidly I decided to still go to salsa but had to step out of the last dance as I couldnt concentrate through the pain. Limped up to the pub feeling very achey and sat down. I moved slightly in my chair and tears pinged into my eyes as a huge pain shot through my groin. I decided enough was enough and got up to call a taxi but as I walked back to the table something pinged in my right hips and I stumbled and had to grab the table. I could hardly walk and was crying as I got into the taxi.

It has got worse as the month has gone on. I am no high doses of painkillers - 50mg of slow release Oxycodone (equivalent to 100mg of morphine) plus 5-10ml of 10mg Oramorph for breakthrough pain. This is on top of my Diclofenac. Because of the side effects I am also on antihistamines to help with the itching, laxatives to help with constapation, antisickness tablets to help with the sickness - I rattle when I walk.

The effect it has had on my family always gets to me. Eds is wonderful and has happily walked to school with Sarah and Ruby, gone off with Tsena and the boys, spent days with Tony or my Parents without asking for me. He fetches my sticks for me and opens doors and carries things for me. And of course he gives me massive hugs and kisses whenever needed. I feel so guilty that I cannot play with him like I used to, or take him out and that I have to rely on others. I feel guilty the housework isnt getting done, which upsets Tony and makes him cross which affects our relationship.

I have my injections this week and part of me cant wait but part of me is very scared. I am scared as the injections make it worse in the first week - and I cant even comprihend how it could be worse than it is right now. I’m petrified they wont work this time, or as well. I need to get back to normal as I was so happy before.

Today we are potty training which is exciting - we have had once accident and one small wee on the toilet so far. I really hope it works this time as I think he’s ready but he’s being lazy about it. I’m having to use lots of incentives but I think once he gets the hang of it it’ll all fall into place. Fingers crossed!!!

I feel really silly moaning about my problems when so many others are going through so much worse than me and I have been really trying to see the positives in life, and most times its been working. But not today!
Last night T was in an awful mood. I couldnt do anything right and he had no patience with Eds. Because of this Edward ended up playing up after being really good all day so I wasn’t very happy. I tried to find out what was wrong but he insisted there was nothing wrong so I couldn’t do anything. I went to bed at 10 because he was shouting at the TV and I cant stand it when he gets in the ‘I’m always right’ mood. He came up at gone 11.30.
Eds woke up with morning and his cold thats been threatening all week has come out in full. Poor chap! His nappy had also leaked into his bed so T had to strip it - so he was in a terrible mood again.
This morning I emailled him asking what was wrong. Nothing he claimed again so I told him not to lie to me. He said he’s just tired and fed up with work. For gods sake we’re all tired and fed up but we’re not taking it out on those who love us! I replied saying he may be less tired if he came to bed at 10 instead of 11.30 - no response. I’ve also said we’ll have a good weekend to cheer him up although I feel I am owed an apology I know it’ll never come.
The other problem is I am getting shooting pains in my hips again and I’m not sure if its hormonal or the injections wearing off. T knows this and just tuts.
It feels like the honeymoon period is over already - we’ve been married under 4 weeks. I wish we were back in St Lucia where it was all so simple and we were so happy and in love!

Wow I’m a married women! I cant believe how much has happened since I last blogged!
I’ve been so busy preparing for the wedding and it was an amazing day, It all went so well! I smiled all day. The honeymoon was amazing as well - truly paradise!
I will start blogging regually now with updates of everything that has happened but briefly:
My SPD has been really bad however the injections are really helpful and I am currently on a really good stage. I even went horse riding in St Lucia.
Tony and I are really happy. We seem to deal with arguments better now which is wonderful. Especially as I had a close friend round earlier in tears as her and her partner are breaking up. However its been a long time coming and I think will be a huge relief to her. I have offered her all the help I can.
Edward is doing really well. Hes a clever kid and has come on loads in the 2 weeks we were away. His speech is clearer and he is noticeably taller. I am hoping to start potty training next week.
There is lots more to write - but unfortunately too much washing to do to sit here for long. I promise to write more often now though.

I’m going back to Spain tomorrow with Edward. It was all quite last minute - only booked it a week ago - and now I’m sort of dreading it. Its a big deal to take a toddler, on your own, to a foreign country and keep them entertained and happy and healthy 24/7. It was easier when he was a baby but he’s quite demanding now and love him as I do, its hard work.

I have so much to get done today but its all got so complicated I’m stalling everything, which is silly but I always seem to do it when things get tough, I suppose its like a defence mechanism. I will get on straight after lunch!

I have booked my driving test now, 13th Sept, and I am really nervous as I’m sure I will fail. I really hope I pass as it will mean so much to me to be able to drive!

I have decided to go ahead with the prolotherapy injections at the end of August. I’m dreading it because I know how painful they are now but if they help it will be worth it as its been tough again the past few weeks.

Overall I am feeling more positive. I had a blip last week whilst I was on my period so I need to sort something to settle my PMT but other than that I have been happy and energetic. I even biked to Houghton on Saturday (although made my hips very OUCH!), I’m doing some more work for the breastfeeding manifesto this afternoon and I have a competition to put on Madmums then I’m away for another week!

If I survive I’ll see you when I get back!

Well thats another holiday out the way - they go so fast! It was wonderful to be away as a family though, just wish it could have lasted longer.

I’ve been quite busy today and actually feel quite motivated which makes a pleasant change! Hopefully this will continue!

I’m awaiting a call from a lady from the breastfeeding manifesto website who wants me to help run the site which will be exciting. I’m hoping I understand it all though, I’m worried it’ll go over my head and I’ll look silly.

My next step is to do some research into where I can go with this next. I might write a petition to Mr Djanogly and send it out locally or I may go more national.

On top of all this my hips have been playing up big style again. I have an appt for prolotherapy just come through and dont know what to do. I’m scared of making it worse but I need to make it better. Its only a month before the wedding so if I through my hips out again it will be a huge deal to me. I need to talk it through with mum and tony I think.

Anyway I have lots to do so I cant hang around here. Chat soon…