Welcome to my PGP/SPD blog: Links and Info:



SPD is Symphysis Pubis Dysfunction.


PGP is it's appropriate name: Pelvic Girdle Pain. (although I disagree as many do and feel this name is too general.)


I have created this blog about my story to raise more awareness in regards to PGP and SPD with links to the appropriate support sites to make your recovery as easy as possible.


The main websites I have found for you to look at now are:


The ACPWH have changed their website and here are the new links to access the 2 SPD documents you need to read which will offer you help when you have been diagnosed with SPD:

http://acpwh.csp.org.uk/publications

http://acpwh.csp.org.uk/publications/pregnancy-related-pelvic-girdle-pain


http://www.pelvicpartnership.org.uk/

(This is a charity support group here to help you as a sufferer.)


http://www.facebook.com/group.php?gid=137142035812&ref=mf

(Our own official support Group on Facebook JOIN US, RECEIVE HELP, INSPIRE OTHERS)



More websites you may find helpful:


NEW CHARITY: SUPPORT PELVIC DYSFUNCTION: http://www.supportpelvicdysfunction.co.uk Donate online, receive help and support one on one and read helpful the helpful guides provided to help you cope with SPD and other pregnancy related complications.


Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton


http://findarticles.com/p/articles/mi_6862/is_2_5/ai_n28445225/


Link about DSP and SPD/breastfeeding.


http://www.plus-size-pregnancy.org/pubicpain.htm#Should%20I%20stop%20breastfeeding%20if%20I%20am%20still%20experiencing%20pubic%20pain%20postpartum


More info on SPD and a link to a support forum to talk to others about SPD.


http://www.madmums.com/GH_ShowArticle~HID~147.htm


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.



Another suggested link that my be helpful: (Scotland)

http://www.pelvicinstability.org.uk/index.asp


Additional links which are useful (Thanks to a lady from babycentre and all the other contributors! You know who you are and you have been fantastic!)


http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf


SPOON THEORY:


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf



It is important to NOTE that PGP formerly SPD is not just caused during pregnancy (1 in 4 women) and that many sportsmen and women also suffer from PGP / SPD.


Hope you find this information helpful and pass it on and invite others, as severe cases are defined as a disability and can be made permanent condition(s) if not treated correctly.


Awareness:


Due to lack of awareness that this site exists, MANY women are sat at home now, MANY pregnant and suffering unknowingly with SPD and/or joint conditions. As a founder of a start up charity I cannot advertise. I am merely asking you as a reader of this blog and supporter of the new SPD charity, Support Pelvic Dysfunction, to share this site with others, maybe friends on your facebook? twitter? Anywhere, by doing so YOU WILL be HELPING many more SPD sufferers like YOU and those that are suffering in silence right now not knowing we are here to help. We need YOU to help us, to help them. :)


We would like to put out a huge THANK YOU to all those women on our support groups and pages, on facebook, who are all discussing SPD and helping one another, and to thank ALL those who are sharing this blog and the charity website Support Pelvic Dysfunction.


Because of you, Support Pelvic Dysfunction receives many emails from helpless women desperate to know if they will re-cover and emails from those that have unknown underlying joint conditions, to which we can assist to get them a REAL diagnosis and help!


Dont suffer in silence!

Email: help@supportpelvicdysfunction.co.uk


(This blog is not affiliated with the charity, however as the founder of the charity, this is my personal REAL, TRUE TO LIFE story, that i have put in place to help others!)



Please enjoy my personal story in the form of a blog below.

Wednesday, 30 September 2009

Recent Physio Appointment: Acupuncture

I was referred for acupuncture to the Physio, and I had my appointment today which was impressively faster than usual.


The lady physio that dealth with me, 'A' was the same one who had dealt with me in the past and even though I was somewhat skeptical about acupuncture and treatment she did do well. She went through everything with me and made me feel comfortable.


She was great today and I underwent the acupuncture straight away which was a surprise as I was expecting to have to have another appointment for it to have been carried out.


The acupuncture took the heaviness and pressure away and allowed me to relax for 15 minutes, I have had pain tonight but I am willing to see how the acupuncture goes.


It is now 20:50 and I am in an extreme amount of pain, so lets see how I am after next weeks session, this is extremely unpleasant :(

Clexane, Clots and Birthing plans:

It was last saturday, I had a problem when I gave myself my Clexane injection into my left thigh, it was extremely painful and abmormal. I had administered it more than 14 times and never had any problems, I phoned urgent care centre as there was a lump present too and my mam was concerned. (My midwife's phone was switched off).

Having told them I was under the care of my parents and at their home and having phoned from a different landline number to mine, I was waiting for her to call me back to state whether or not I could have a home visit. I had told her I was pregnant and had SPD.

She sent two standard nurses to my home address whom woke up my husband who had been on a nightshift. He was scared hoping I was ok. I assured him I was just getting a check up and some advice as to where to inject 'tomorrow' etc. He gave them my parents address.

2 hours later I had heard nothing so phoned urgent care who said abrubtly and impatiently that they had passed it over to the nurses in my area and they are very busy, and there was not really any allowances for questioning so I just said thanks as the call was terminated.

A staff nurse turned up about an hour after that and said she couldn't help me at all and thought I needed a dressing, she didn't understand why a midwife had not been sent out.

She said that I needed to go to urgent care to be seen, my parents luckily were able to take me.

The receptionists were fantastic and sent me to the day assessment maternity unit. The lady midwife there not only helped me with the Clexane but advised me on many other things.

She spent ages going through things and reassuring me about things and confirmed that the tender lump was normal (a lady Dr was present too that was describing clexane side effects too) and that it is nothing to worry about.

They advised me to go organise a visit not on a sunday as is usual, but on a less busy day mid week or something to see if i can get in and out of the birthing pool, ( hoist may be needed ) and she discussed the risks of normal births (out of question) and caeserians which can cause DVT and I would be a high risk patient.

So I need to speak with my midwife and consultant now.

A pleasant experience in the end and I cannot fault the hospital this time, it was fantastic and has restored my faith in giving birth there.


Thursday, 24 September 2009

Why are they allowed to speak to you like that?

Are people that work for benefits departments just trained to make you cry afterwards?

This is not the first time I have experienced inappropriate comments and attitude when I have been on the phone even just enquiring about benefits, I just wish I had the guts and energy to stand up for myself to them... I find myself politely debating with them as opposed to actually saying, "well that is not for you to decide is it?" or even "I didn't phone you to take abuse or inappropriate comments, I phoned you for appropriate advice and help not your opinion."

I phoned DLA to let them know my pain has gotten much worse to the extent going out in the wheelchair is now a problem and told them I am on Clexane, the lady I will only refer to as 'S' was extremely unhelpful. She said she can only put forward that I am on Clexane and not update my information in regards to my immobility and she was making comments like "I hope you are not relying on getting this benefit as if I were you I wouldn't get my hopes up!" and her excuse/reason was because she had been in a situation when she was pregnant before. She couldn't understand that SPD can be caused by pregnancy and will last after my pregnancy nor that it can also occur in non-pregnant individuals. Her conclusion was that because I didn't have the disability before I was pregnant it can only be defined as a pregnancy illness and not a disability so my appeal won't help.

She also said I won't get a home medical visit despite me asking for one as well as supplying a letter from my GP and my consultants details.

She was getting a lot more involved than I feel she should have by even trying to work out my 3 month period and adding my 6 month period (eligibility rules) to say that I am not eligible anyway as even if it were defined as a disability which it is her opinion that it isn't, it wouldn't matter anyway as the eligibility months April next year.

She then reassured me, if you can call it that, (knowing I was sobbing in pain and stressed and 30 weeks pregnant which she was extremely uncomfortable that i said 30 weeks and said about 7 months then? ..as if I was making her job difficult by saying that) by saying that it will take several more weeks anyway for them to even look at it and then I will probably have to appeal again if i want to and it would go to a tribunal.

Shocking I know but they don't seem to think so.

I phoned the job centre and spoke to a lady I will refer to as 'S2' she was more sensitive and tried her best to help me, unfortunately we are not eligible for anything else as my husband is under 25. She was great though and her opinion was that if she had some spare cash she'd pop round now to help me, she couldn't believe what we are going through and I kept apologising for putting her in that position in regards to finding out what to do, she said it was her job and she is sorry she cannot help further. She suggested I call M.A for a payment advance as I cannot get crisis loans as we're paying two off (been here before due to the 'age' discrimination the system has) and gave me Citizens Advice's number. 087 number :(

I don't want to run my phone bill up anymore especially after the DLA and in all honesty I doubt the DWP would pay my M.A in advance as it is against their rules and system...exhausted.

I guess it comes to something when we work really hard and want to work and unemployed people (for whatever reason) are able to purchase new things for their babies from the grants etc and we who are working and trying to make our life better cannot even do that and have to watch whilst they have the luxury of doing that.

I e-mailed the council and filled in an online claims form too, so I have done everything I can at this time, I don't know how we're going to pay £400.00 rent AND £195 council tax this month!!

We can cover rent and bills if my M.A. is paid on time but what can we do about council tax??

We will just have to sit tight and see what happens now, but I am too ill and immobile and pregnant and stressed to be able to move home....

Looking for a miracle, anyone know where we can get one for free?

More isolation and struggle

We had our first parentcraft class last night, my husband walked me there pushing my wheelchair a 30 minute walk at best, we went early as we had to spend some time in town to post my DLA appeal and a complaint in regards to having being mistreat by a DR from Urgent Care in regards to my disability and my husband.

Having got there in the end I was determined to stay and was in a lot of pain, I cannot comment on what people thought of me being pregnant and in a wheelchair but I was determined for them to know the truth, that it was because of the pregnancy / the SPD that I was in a wheelchair, there was a lot of shocked faces.

The pain got much worse and unfortunately we couldn't stay, and due to my pain etc we won't be attempting to go again as it is also a 30 minute walk home too and my husband pushing me is just no good, for him or for me as pavements are complex and bumpy and extremely painful when I am jolted. We didn't have transport money this week anyway, so had no choice.

I have e-mailed the council explaining that we have had no income due to my husband being off work extremely ill and I am waiting a response. We will fight to keep our house all the way. We have also had no help financially towards the cost of baby things in which are much needed as we planned to have worked a lot longer and this disability that is SPD has prevented us from earning the income we were adamant to earn. Which is not our fault. Fingers crossed we get some help as if we do lose this house I am the one going to suffer being pregnant and immobile, how am I suppose to pack things up/sort things out to move!! I don't know if we can... it would just be extremely stressful and painful, and that depends on if they even bother to rehome us as this one is private rented and we're too high on the list we are on.

So another day of being penalised due to the disability. We have completely tried to give up caring and trying to keep brave faces, but underneath it all... we're terrified.

Monday, 21 September 2009

Consultant Appointment and Update: Monday 21st Sept.

Got collected from home today with my husband, my registered carer, via GP transport/ambulance to see my consultant.

My appointment was at 10:30am. They were running extremely late and my spd pain was getting worse. Had to go to a seperate room to inject myself with clexane.

I had weird bump sensations last night, pressure, very uncomfortable, bruising and tightening that would come and go.

Whilst I was at the hospital waiting I broke down and wanted to come home as it was horrible sitting in the waiting room in absolute agony and crying my eyes out. There was no spare room at this point.

When we finally got to see the consultant it was about 11:30am quarter to 12 but every second prior seemed like an hour with the pain I was in.

The consultant said I had Braxton Hicks last night and checked me over, the TENS machine which had helped me the last few months has stopped helping now so I handed it back over.

The consultant checked me and was extremely sensitive today, in fact he was fantastic, he listened to everything I had to say and I think realised that we are having a really bad time with the pregnancy and that is is affecting my husband too.

He was great and did an examination which fortunately showed that the cervix was closed and I was in agony during the examination and moving for the examination, much worse during to the extent I was in fact screaming and I was quite loud so people will have heard me too. I just wanted the pain to stop. The consultant said it seems anatomical and hopefully will subside after birth, fingers crossed, and discussed treatments that are available after birth.

He has referred me for acupuncture and awaiting a physiotherapist who has seen me 3 times before to get back in touch.

Better end to the day as despite the pain I was sent for a scan to check the growth of the baby, the baby is definately a boy and is healthy and happy. We got to see him properly on the screen this time and got a gorgeous picture to take home of him sucking his thumb. Truly Beautiful.

10 weeks to go, it will be so worth it...


Having come home the spd pain has unfortunately continued and I was bowled over in tears for quite some time before managing to drift off to sleep, upon awakening I am having Braxton Hicks again and spd pain is bad again. The babys head keeps going low down into my pelvis which is just adding to the pain.

So right now I am desperately hoping for a good night.... fingers crossed as I am absolutely exhausted. Well and truly kaput.

Hoping for some light at the end of the tunnel... Relieved the pains nothing sinister and the babys healthy but looking for some time to enjoy this pregnancy.

This pregnancy has confirmed that it would most definately not be wise to conceive again.


Saturday, 19 September 2009

My husband:

I just want you to know that you are my life, you are the reason I have 'better' days and I cannot voice how much I appreciate you being my registered carer and dedicating over 144hours a week just to help me look after myself and unborn baby.

I love being married to you and hopefully I will get better and be able to show you how much you mean to me by spoiling you for a change.

You do so much for me and you work too, I don't know how you do it as I know I am getting worse and it is draining looking after me all the time including during the night. I am sorry I need 24/7 care but you just being there makes me feel safe and warm, just to be held in your arms.

Through all of this you are my rock. My soulmate. We have been through far too much together already, way more than people our ages should have to go through and I thought 2009 would be a great year for us as I would have never been able to start my business without you and you encouraging me, and even that was extremely difficult and we were facing many obstacles before we even got off the ground.

I hope 2010 is a better year for us, a new baby, our first, after we were told I could never be a mam, look at us now despite all this hardship, expecting our first baby, a new start and I am hoping for a miracle, so I can walk and be the wife you deserve.

You push me about all the time in my wheelchair and it is hard work I know, I hate it too, but I would do everything and more for you if and when you ever need it, I am not used to being the recipient of help and it's been difficult adapting. Thank you for just being you.

I love you for just being you.

I cannot wait to grow old with you and you will make a fantastic dad.

I cannot really put into words what you mean to me, and I love being a part of your life.

Your wife and baby bump. Love you always and forever.

<3

Pelvic Partnership Call Back and nhs baby stories

The Pelvic Partnership called back yesterday and my husband spoke to them. They have confirmed that without treatment my condition could last up to 2 years or more. They have said that it is treatable during pregnancy and we have to go private since the PCT have said they don't offer this service currently despite what the NHS first book for pregnant mothers states about SPD.

This is not good news.

We cannot do that at all.

* * *


I don't think we have much of a national health service anymore, more and more people are telling me about how our hospitals are leaving babies to die over an estimated due date! By refusing to rescusitate babies they estimate to be under 24 weeks! And what makes it worse they are not even issued with a birth or death certificate, which in my opinion I define as murder and immoral. I don't want to go into detail I am so upset as it is.

Just needed to get that off my chest and people are welcome to correct me if I am wrong.

Funerals, Clexane and Anemia:

I am still broken hearted that we had a death in the family recently, which hit the whole family hard so we cannot even try to imagine what the mam (our relative) feels like. It was unfortunately the death of a baby which we all loved. I am not going to go into details as I don't want to upset the lady I am talking about as she has been through enough.

What I will say is at the funeral my heart was broken for everyone especially the mother, our relative whom I think the world of, she is the most amazing lady you would ever meet and a fantastic mother. Heart of gold!

I felt awkward and in the way as I attended with my wheelchair and didn't want people to make such a fuss when I was offered the opportunity to throw petals which is bringing me to tears now, just thinking about it. We will never 'get over' this and we will carry her memory in our hearts forever.

* * *

I am now injecting myself daily with Clexane which is not exactly a nice experience. (This is because I cannot walk and I am high risk of blood clots). My legs are black and blue. I also have to take 3 iron tablets a day as I have become anemic.

I am 30 weeks this Wednesday the 23rd Sept, based on my estimated due date, which means we have not got much longer to go. This should be a really exciting time as we prepare to meet our baby but it couldn't be any farther from it, as my husband has been ill for over 3 weeks the house has suffered.

We already had 3 rooms that were storage rooms we tried to get sorted and failed and now the house is worse than ever. We need to get rid of stuff, we have been scared to just throw things away as we may need to sell them later but now we just gotta throw. Also we were giving things to charity but it has got to a point now i don't have time or the chance to wash things and sort things for charity anymore which is also upsetting me as i have always given lots to charity.

Having looked at our rooms we don't have anything worth anything anyway so we just need to be able to start sorting things out which is hard, extremely hard when I cannot walk and I am sleeping downstairs on a tall airbed as I cannot make it up the stairs. My hygiene has suffered due to this too which is more than depressing.

I have been selling some girls clothes we got when we found out I was pregnant to try and raise money for other things for our baby, we still need a cotbed and many more things. I don't like to feel like a charity case, for a married couple who have worked so hard you'd think life was much better than this. We don't even have money to decorate our house and need a new carpet in the bedroom (Desperately) and a fridge freezer. We don't own the house and had to fight for a carpet for the living room too, that took ages as we were originally promised laminate, long story...

The lady who owns our house wants to sell it so if we have to move she won't be renting it anymore so I guess she feels why should she fork out for new carpets etc....

We painted over the wallpaper as a temporary measure but hope to get back on our feet soon, me more literally as well as financially.

We have my husbands brother coming to stay and we have nowhere for him at the moment, today is saturday and he comes on tuesday, my husband is working all this weekend so my parents are caring for me (being cared for is degrading enough) and we are at the hospital monday as my consultant wants to see me as i am now on clexane injections.

My parents have kindly offered to help this sunday but I am still going to be stressed as I am used to being so independant and balancing jobs and everything and now I have no choice but to sit back and observe which I won't be doing, I will hurt myself going up the stairs I know I will but I have to, and sit on the bed and sort through things as best as I can. It will take me ages to get up the stairs, if i cannot do it though i guess i will have no choice but to sit downstairs.

Crying has become more of a daily routine now as I am feeling more and more useless and feel like our life is falling apart around us... and there is nothing we can do about it as I cannot work...

Social Services and benefits

With health professionals (midwives) scaring the sh*t out of me about how we will cope when the baby is born I took it upon myself to phone social services myself. I asked for help for now, told them our situation and everything.

They have been more than helpful.

My husband is now officially my registered carer, they have been out to visit us, opened up our world a bit by offering advice, support and cheaper transport options.

This is the adult section but they have said since my husband is going to be there most days as he is now the baby would'nt be defined as 'at risk'; there is no psychological issues etc.

Midwives are still commenting though.

It has taken me years to conceive and now I have, I have got SPD and my life feels like it has turned upside down.

They are looking into financial help as the govt. are not very favourable to couples under 25 who are married, and we live in a Private Rented house, don't get me wrong we have been trying for a council house for nearly two years now.

I was on ESA (Employment and support allowance) and because of one word 'contributions' we were not eligable for the surestart maternity grant of £500.00 that we really need. So social services are looking into a grant of £150.00 instead. Fingers Crossed.

Without getting into too personal of details I will be honest and say that we had been fighting with the council over council tax for just over a year, in which we just got sorted. However they are now wanting (as it took so long to sort) rounded off to £200 for september and almost £300.00 for every month thereafter council tax.

They told me over the phone I didn't owe any overpayments.

Had an overpayment bill, was that sick of it all we paid it in full using part of my health in pregnancy grant.

Little did we know my husband was going to be seriously ill for 3 weeks and end up with no income as he does not get paid when not in work as he is an agency worker for a local warehouse company. We have also been worried about him losing his job.

On top of that we have bills like everyone else.

I have phoned the Benefit enquiry line only to be made to cry, the gentleman over the phone said basically that there is no help for us and our only option if sh*t hits fan is to be homeless and starving despite me being pregnant and that they cannot 'make a benefit up just for me' not that I had asked him too, I phoned him as I was desperate for advice!!!

So as optimistic as everything is, we are just plodding along as best we can and have basically given up, we now have the attitude where they can take everything from us we don't care anymore, we have worked since 15/16 years old, both of us, I worked whilst going to college and what a waste of time college seems to have been for me as I could get more help if I just hadnt bothered!

Our banks running low and we are just hoping for my Maternity Allowance soon so we can meet Rent, bills and then hopefully food. We have been in problematic situations before due to the benefit system based on our marital status, age and lack of children as well as my past history of endometriosis in which I would have been on Morphine in hospital till 4am and still HAD to work at 6am of course I couldn't hold a job down...who could in that situation? (so have not worked a full tax year). So what's new? Who cares about this? No one!

I applied for DLA as I meet ALL criteria for higher rate and they declined me so I now have to appeal and have asked in my letter for a home medical examination. They said they thought would be ok straight after the baby is born, how I wish that was possible, not only do I have severe SPD I will also have muscle wastage too... how did they come to that conclusion? All i can think is that the physio that was dealing with me who only has experience with the common SPD which starts around 37weeks and clears up after birth will have stated about her literal experience and not taken my situation into account at all.

SO fingers crossed the appeal goes well as I am sending all the evidence I can find including a GP letter.

I was wanting to work as far up to my due date as possible with me start up business, and thats depressing alone... that I cannot do that!

We have no system of help when we need it, never have had, not us two anyway, so we have had no choice but to work, how can someone like me work at the moment??? I would love to and I cannot and I feel like I am being punished because I cannot.

I am glad I am keeping this blog as if things do get worse I want to be a case study atleast to help others if possible from not ending up in a situation like this!!! I wouldn't wish this on anyone!

Isolation and a drama queen

I have been stearing away from updating my blog as lot's more things have happened and I basically have not been able to deal with them right now. I have become more introverted and have never felt more alone.

I keep venting on facebook and all I can imagine is that people will have gotten sick of me whinging by now, that lass who always feels sorry for herself etc..... well I don't feel sorry for myself I just don't have anyone to talk to and feel so alone right now.

Never in my life have I been in a position where I cannot walk. I have been in positions before where I have been in constant pain for long periods of time but from those I had gaps in. i.e. endometriosis etc. This time I have had no gaps and it hurts everytime I move, even the slightest.

What mam can I be now? My husband will have to help again so much and it really is not fair on him.

I spend most of my life trying to cheer people up and help people and right now I feel like everyone is my enemy, but I have good reasons why.

People at the moment, health professionals etc, keep saying I am putting me and my baby at risk by not walking, asking how will we cope when the baby is born? Talking about vulnerable baby registers and things!! How is this helping me cope??? This is extremely stressful for me.

I just want to curl up in a ball most days now and cry myself to sleep, don't want to face the world.