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.

Sunday, 24 January 2010

Well finally got some answers....

...but none that were desired.


We have got a diagnosis that fits as well. I have been diagnosed with Hypermobility Syndrome. Sounds scary but all it means is over mobile joints.


I have had this since a child and I never thought anything of it, didn't know it was a Syndrome and definately did not know it can and will cause the pain I am suffering with, it has triggered SPD and unlike SPD which comes and goes for the rest of your life, Hypermobility Syndrome has no known cure and is a permanent life long disability.


Hard to digest right now when this morning at 4am my husband was rushed to hospital with chest pains and crushing sensations which thankfully turned out not to be cardiac but is caused by stress.


We have NO help, we have my parents but thats all we really have right now. Feel abandoned by family, and some friends. Feel isolated, alone, insecure, gutted, desperate and still we are trying to fight.


GP is doing all he can and he is doing well but right now we are suffering still.


Nothings changed yet.


Scared to death of asking for help for our stress and things, we feel after what had happened with social services and the accusations over our son that have just been proved wrong and are dead and buried we are terrified of them digging it all up again, we daren't confide in them about the help I need, my crying, my desperateness for pain relief as I am tempted to drink up my whole bottle of Oramorph Morphine just to get a break from this pain! 


As we know we are fit and caring parents and wouldn't do anything to hurt ourselves or our child but when we are stressed all they hear is 'stress', they 'cannot cope', best 'take the child' or probably accuse us again of being unfit, they never seem to want to look at the whole picture, examine the child why don't you, not a mark on him, happy and loved, and clean despite the poor souls environment, hardly what i wanted for my son, I started my own business to prove that one, I want the best for our son and my husband and yet they keep making me feel like a slave driver, a problem, a problem maker and lazy, what do they gain from this?


Well we have proved its all real and not in my head now! And I still need to see that Psychiatrist they said to do a check to see if it is psychosomatic, despite the evidence they have of hypermobility. What about a full check up? What about the stress THEY are causing ME, I sware I need a counsellor now, and if they continue people can only take so much? Where is MY help? Or are they waiting for me to naturally breakdown due to their actions so they can maliciously use it as a reason to justify the ex consultant who should be fired for what he said and the way he said it and what he did, to help him save his job and make the social appear to be doing theirs by taking our SAFE child away and then say, well we have saved so many children this year despite the ones who have suffered when:


They should be saying: We have ruined several peoples lives to appear to be doing our jobs and we prefer the homes we can sit and have a cuppa in!


Our social worker who investigated, and this has to be said despite how i feel above, did try and help me, they WASTED her time and i felt it for her, but the leaflet she gave me no one from the organisation worked to help over 16's here where i live. County Durham. (Not afraid to state county as something needs to be done).


Are they fixated on proving me a liar or will they start to believe me and stop us from being a prisoner in our home, living out of a suitcase, stuck downstairs with a 2 month old baby!


Still have no carpets and Freecyle banned me due to some nasty messages i got from their moderators and then THEIR OFFICIAL staff which i still have all because the moderator didnt answer a question i had about the rules, about what EVERYONE was doing with their e-mails and also about the post I made for charity, despite me having evidence it was for charity! 


The organisation themself still to this day don't care that I can prove my innocence and would rather scapegoat me than have to replace the abusive moderators of my local group! Is it easier for you? Well atleast I can sleep at night and yeah! Thanks for your HORRID COMMENTS ABOUT MY DISABILITY TOO!!!! Hope you all are proud of yourselves there at freecycle organisation, sounds you need to hire some new reps for the groups then maybe people wouldn't be treat like this?! But no, you think you are all so perfect and don't want to own up to your malicious actions. 


How much more am I suppose to take and be OK? How many times am I suppose to help people and be let down?


How many times do I have to speak out for HELP and be left with silence? 


What if this was YOU?






Stairlift:


We have our social services stairlift re-assessment tuesday, they already assessed?


Nothings changed apart from a diagnosis of a condition that can be proved and can back up my pains are not psychosomatic???


Still... WHERE is this HELP?!?!?!


DESPERATE here.......... losing faith in the world we live in and suffering all the time!





Thursday, 7 January 2010

*Dreams of the days to come* ...will be like winning the lottery.....



Hopeful finally...to be able to have a shower in our own home and use a real toilet in its own private room!!!
I cannot wait! It's gonna be like Christmas or winning the lottery!!! <3 YES!! I


Having got myself a caseworker from an organisation called Shelter, I am now feeling hopeful:


summary of conversation:


Apparantly due to my deprivation of much needed services, i.e. toilet/bathroom, and with being registered as a disability, and suffering for 7 months+, etc... I should have been awarded a stairlift regardless of any letter from any consultant before now.


They apparantly need to assess on the needs of the individual and how high the needs are in which a commode is not suitable for use long term and no access to a toilet/bath or shower is not again a long term solution, along with no access to upstairs.


I am not going to state anything that is confidential or important to the case but the caseworker will now write to social and myself and I am waiting for that to happen now.


If things need to be taken further they can be as well, so it is not a lost cause after all and sometime soon i may be able to see the upstairs of my house which is extremely exciting, as i have been in here 4 months already and don't know what its like other than on camcorder!


They also should have sent me a copy of the assessment which they have not and they wouldn't even define the criteria all they kept saying was that the disability needed to be long term and the physio cannot write to them, nor will the DLA award (official benefit for registered disabilities) be suitable and only a medical opinion from a consultant will do, which i feel all the consultant i have is willing to do is say it is likely to go which they have and have already been proved wrong, if they keep being proved wrong and are happy to write the letter as they are not responsible anyway as they use the word likely why can't they tell the truth and say it is likely to continue?


He (consultant) won't even see me now when i needed him 3 wks ago and have tried to make appt's as it keeps getting worse! Bet he hopes its all gone by 11th week hence why he's making me wait till then, but how can it magically sort if it keeps getting worse.


I had undefined/undiagnosed pelvic problems before, since i was 14 actually and even after diagnosing polycystic ovaries and endometriosis the pelvic pain (and times where i could not walk) would still occur but nothing like to this extent, to the extent i thought maybe it was period pains, but have found out it is not, so it is possible but i dont know if it was, that it could have been SPD all along, and if i don't have SPD then it could be the problem i had before getting worse whatever it is.


Either way, I cannot go on living with such deprivations, they are affecting all of us badly, me, my husband and my son, if I have to continue to suffer, my son is getting older and he will need his own room soon.


I know he is only 7 wks old now, but he is babbling, making sounds that actually sound like words now such as, 'yeah', 'ah', 'cah' etc, is in 3-6 and 6-9 months clothes, and is teething two large back teeth top, back left and right, and bottom front middle one small tooth. He is already established his 2 night feeds now and is just hurting teething hence keeping us up, and when we should be asleep i am in too much pain. He is doing so well and we are so proud of him.


Last night and early this morning i have been in so much pain. Had to overlap dose of morphine as advised by ambulance crew that came out and my GP is not even available until next week!!! I was expecting him to call as in phone this morning and no one must have asked him to which is shocking!


BUT!!! Now I am extremely excited at the possibility of having a shower, being able to wash my hair, in my own house! Being able to go to the toilet in a private room using a proper toilet, as i kept getting embarrassed in the living room i started using the commode under the stairs in the dirty, dark dusty cupboard until i wacked my head off the cupboard door handle trying to stand up and stood on a screw/nail.


Then it went back to horrid and embarrasing living room, no privacy, scared incase someones gonna knock on the door, are the doors locked, are anyone going to just walk in? Or any professionals expecting to be let straight in but I wouldnt want them to know i was on the loo either.


Absolutely dehumanising it is, degrading and horrifying.


So anxious.


Being able to see the bits of carpet we got given from relatives and friends for upstairs, all apart from babys room, stairs and hallway.


When we can move our bedroom upstairs we can finally also use the decorating vouchers and it can feel like a proper home, we can get carpets for kitchen and living room now too!


We can have proper space in our dining room for our baby to play and change etc!


I can stop living out of a suitcase with only minimal access to only some clothes.


We can unpack.


We can open our living/dining room curtains now!


We could even get a dining table and a travel cot.


Wow we can do all sorts and i can feel normal again and clean and a woman and happy and i can then be confident to leave the house in my wheelchair and go to surestart with our baby when weathers better.


I wont be scared of getting stuck upstairs and health and safety.


I can put pictures up.


Baby can have his own bedroom! Could give him the small room for now as it has a radiator now and his cotbed will fit in it! Till he gets bigger and his own big boy bedroom which can be his playroom... or vica versa!


We have so many choices now, I am so looking forward to being able to shower any time i want to now, (well with help from husband who's 24/7 carer).


I really hope this gets sorted, I can wear my nice clothes and feel nice enough to wear make up again and feel more like a woman and myself. 


It feels like I can start and be me again soon.... the suffering can soon be over!





SPD awareness...

...On a positive note I am attempting to create a fully clothed and fun themed Calendar to raise much needed awareness on SPD.


SPD sufferers are to be the models, standing proud with their crutches, or sat brave in their wheelchairs, to which I am happy to model with them in my wheelchair too, more info can be found on our facebook support group which the link is available in the links section at the top of this blog.


My business is closed but I am still volunteering under my business name as I will be organising the calendar and my business name has always been my project alias, hobby name and has been used for all/any projects I have done for the last 9 years, when I first started under the name.


We are looking to support a well known charity that affects most people and to reach an audience who will probably not know much if anything about SPD. We are currently thinking of supporting Cancer Research, as I lost a loved one through Cancer and many people will have too, or atleast know someone who has.


All volunteers and I, will not make any money at all from this project and the costs will cover the printing of the calendars and the rest directly to the charity. We have lot's to sort out and need to be able to sell these calendars plus other gifts for models who may not make it to the calendar due to amount of volunteers, all for the charity, online to make it available worldwide to which I am trying to organise something now.


Really hope this raises the awareness and raised the much needed and appreciated funds for the charity too!


So... positive project to work on and due to my disability and the complications we are aiming to do this as a 2011 calendar so have all year!


*Wish us luck*

Lack of strength...

My strength? What strength?


I don't have any anymore, just like I am losing faith in society and people.


Over the last few weeks I have encountered some offensive and malicious people that are ignorant and seem to gloat over others suffering.


Online, higher organisations, staff, moderators of groups to help the planet *This one surprised me lot's* and even in shops and supermarkets.






Just as 2 examples and unfortunately not the most offensive and upsetting situations I have found myself in recently which involves disability hatred.
I am constantly shocked everytime I come accross more and more disability hatred towards myself, they should be ashamed of themselves, this is a new disability I have and at the end of the day when i was independent and could walk I would never and have never even dreamed of treating the disabled with such disrespect, I even dedicated almost a year to helping Learning Difficulties Disabled Adults and Children and I think everyone should complete a No Secrets workbook thats in place instead of legislation for vulnerable people. 


The last time I was ever out of the house was the 30th December, briefly. I am now so ill I am extremely housebound and cannot even turn myself in bed.


30th Dec supermarket:


One lady in the supermarket walked into the lift for the disabled with a young lady with her and trolley. I tried to get in and just said "Can i get in here please, i cannot use the stairs" but said this smiling to infer i want being rude and genuinely needed to use the lift, the lady just kept saying nastily "no ones arguing here, no ones arguing" and i decided not to acknowledge it at first as it was silly as she could have easily used the escalator and i was not rude to her about how lucky she is to be able to walk and do everything pain free etc, but she went on and on didn't she!


So i said politely "I never said anyone was" and i laughed it off, all through the supermarket when we saw her she was giving us evils as if she wanted to hurt us badly (My husband who is my 24/7 carer, and I), it was ridiculous!


I said as we left the lift to my husband, and i don't care if she heard me as she was out of order, "i would hate to see what she would do if someone was nasty to her, lol" Which I think is extremely timid in comparison to her attitude.


Please note i was using the battery operated trolley car thingy they have at the entrance to do shopping as my joints are hurting so self propelling was hurting too much.


A second lady, saw me in the queue at customer services behind a man buying lovely flowers for someone special obviously and he wanted to wrap two bouquets as one big one, really sweet, and i was queuing to get my wheelchair back so we could go, this lady kept eying up the queue and knew i was in it. 


So she decided to stand to the left of the man and push in and stand at the desk knowing i couldn't get in to be served in the autocarthingy/motorised scooter with basket.


So, I decided to speak up but politely: I said to her "Excuse me please, I am in this queue." and she said really horridly "Alright, i will let you go next, there is no problem, there is NO problem is there!" but it was said evilly as if i was trying to make a problem etc, and the man buying flowers must have felt sorry for me as he winked at me and nodded to her and shook his head in disgust, bless him, made me feel a lil' better, but she still tried to get served next and i spoke up and said that i am next and can i have my wheelchair please.


Those things are so hard to operate too i try my best to keep out of peoples way thats why i had queued to the right of the man and other people understood that, why couldn't she.


I like where I live as its full of friendly canny people, but where are all of them hiding lately? Im in a wheelchair for gods sake, i am not being rude, i don't play on my disability i am fair, so why cant they be fair, i stop to let people past and things when they cane easily get through anyway and decide to walk infront of me anyway. What threat am I, honestly?


And in regards to services that are free on the internet to help the environment, I don't expect to be treat offensively by owners and then staff of the organisation running it when all I wanted to do was be a member as I rely on such internet services due to my disability, what harm am I to them? They just kept being offensive and unprofessional in emails and made unprofessional and offensive remarks in regards to my disability, so I have left them to it, I know I cannot change people but surely the staff of organisations should have some courtesy instead of threatening me, all of them, unnecessarily and allowing the distribution of personal information which was illegal, no matter what happened previously. It is an outrage.


Its upsetting :( but i keep my chin up, smile, be polite and try to laugh it off. 


Even the Dr.'s I am at, the reception staff have disgusting attitudes, most days in general, but they keep asking for my husband to go to the surgery and leave me on my own despite me being disabled and needing him indefinitely 24/7. I would not mind as much but they ask me up to 5 times and it makes me feel like they think I am lying or I am not being taken seriously so when I phoned up to discuss this today and wanted some notes on the system, they refused to put me through to the office manager and just kept repeating over and over again the same sentence as to infer I am dumb 'You need to speak with the GP I will put you through" even when I asked for a reason as to why I need to be put through and lot's of other questions, that was the answer, do you know how frustrating that feels?


 I looked into changing Dr.'s surgery's to another one, however it is fully booked, but the DR / GP I spoke to instead of saying, o.k. I will address this issue and see what can be done so you are only asked once, decided that he feels it is a perfectly reasonable request to ask my husband to come in to see them, either for him or our son, and leave me alone to soil myself and be in absolute agony with no access to anything and the inability to move or turn in bed, to which my husband refuses to do. The GP replied to his refusal, "Many others do it", to which my husband replied "I am not the others, and I am not prepared to leave my wife to suffer like that."


When I asked the GP what he would do if his wife was in my position and he was asked to do the same he said "You are twisting things now" and I do not how I am twisting things by speaking the truth?


Life ey?


What's the point anymore?


I am housebound anyway and surrounding myself with things I love, including my husband, our baby and lot's of hello kitty stuff is allowing me to have some sort of a break, but it is so frustrating when you are not capable of sorting any of these situations out nor able to prevent further abuse happening to other indivuals, and you are sat or in my case stuck in bed injecting Clexane for blood clots daily (40mg) staring at 4 walls completely useless....


...well and truly useless and feeling unmotivated, not feeling like eating at all, crying, stressed, frustrated, and feeling like a failure....


...welcome to 2010....






Hiding away and hoping...

I have been hiding away and avoidant again for a while but now i need to speak up again...

Xmas is over now and we had a nice xmas as we stayed at my parents and they had bought a sofa and a matching sofa bed for their living room just for us!! Can you believe it, changed their furniture just so i would be able to sleep over at xmas.

I love them so much!

We are still fighting for a stairlift, our son is 6 weeks old 1st january and I am still trying to get my 6 weeks check up.

Whats happened about the stairlift?

Well, my new consultant originally refused to send social a letter about me as he refuses all his patients since a check from the county council previously bounced therefore its been seriously held up.

My SPD's getting much worse and a while ago now i was in hospital with the stomach pains, different to SPD pains and the consultant who saw me on the 10th the one who discharged me without telling me who i was reassigned to on the 10th Dec said that it would subside 6-8 weeks on, here I am 6 weeks on and its getting worse not better and now my joints are stiffening up, in which my health visitor (who is bloody fantastic by the way) and my GP (who does try his utmost best bless him) said that its possibly due to my immobility.

Anyway I got a call from my consultant and I asked for his help and I said to him they need me to meet certain criteria and my SPD is getting much worse etc... they need a letter to say that its likely to continue for the inforseable future and i explained all the problems with not having a stairlift. He said that if they did not pay him he may send me a letter to give to them.

Then i receive a letter this morning saying that he will only be prepared to write to them if a payment method is arranged on the outstanding amount and that it will briefly say that he believes it will subside in 6-8weeks!

By the time he sends that it will be around 10 weeks and it wont have subsided so they will shut my case down despite the SPD is still active, not accept another letter and i will have to fight to get all the way to 'start' again and wont be allowed to pass 'GO' as I will be stuck on the 'jail square' and am being refused bail and a get out of jail free card! SO basically its all a game to them and I will have to try and get on the list for an OT assessment again that is if theres not a policy, which is what i am expecting next, that prevents them re-assessing for like months or a year probably!!! It is so unfair.

My problems due to lack of stairlift:

-Stress = no eating and no sleeping. irritable, defensive, shaky, sweaty and on edge.

-cying

-not being able to decorate downstairs as too many things in living room would have to be moved and no where to put them outside, in kitchen or hallway, so no carpet, and no wallpaper.

-not being able to decorate upstairs, as Rob wants to do it WITH me and too right as it is our home and we like to pick things together but i cannot even view the rooms.

-i am constantly getting infections and I am saw in places I should not be and I am using sudocrem, I know its embarrassing but they are doing this to me, making me suffer!

-Feeling no self worth as I wont wear nice clothes or go to surestart with baby or anything as how can i leave the house like this?

-cannot have bed bath as cannot get into positions to clean properly, the shower seat is adapted so i can wash everywhere with husbands help but cannot stand for long or move to positions where i can have a bed bath and cannot wash my hair at all.

and much more... :(

UPDATE from: Thursday 7.1.10.

My 6 weeks check up has been unnecessarily postponed till late January around my 10-11 week postnatally.

I am in a lot of pain with the Prolene stitch and it is opening up my wound.
I am getting worse in regards to my SPD.

I requested an appointment earlier than that and as soon as possible due to the need for an assessment and some help, they have refused despite me breaking down in tears and needing help. They have said if i am not happy change my consultant then!

My consultant was still only willing to submit a report about my SPD for the stairlift (bearing in mind his opinion is that the stairlift is nothing to do with him) ONLY if social services / county council sorted out some sort of payment that was outstanding, which i received a statement confirming this in writing to which without further, and much needed assessment, he was going to write that my SPD is likely to subside around 6-8 weeks, I have been trying to get an appt. as soon as possible as this was his opinion from when i saw him at 36 weeks pregnant.

I have seen him twice since but for no more than 10 mins max per seeing him. The first one was to say that the week i was induced he never told me but he was at a meeting down london, then i was discharged without notice to which when i phoned for his help, his secretary stated politely that i am not to contact him again, and the second time was when my prolene stitch was swollen and they did a CT scan and said that there was nothing sinister and they will leave the Prolene in.

I am starting to feel let down now as more people i meet are making me feel like I am a problem.

Luckily the social services OT is willing to hold my case for now and I have phoned DLA for help from them to which they are sending me a letter to forward to social to say about what rate I am on and how long i have it for, to attempt to help with the case. She will show it to her manager at social and see but apparantly a consultant needs to write them.

So again, I am suffering, and waiting.....