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.

Saturday, 17 October 2009

My birthing plan : to help you create yours:


(HEADER:) BIRTHING PLAN (MY NAME IS HERE) PAGE 1 OF 2.

D.O.B: --/--/---- BABY DUE DATE: --/--/----

NHS NUMBER: ----------- UNIT/HOSPITAL NUMBER: -------

CONSULTANT: (NAME HERE) MIDWIFE: (NAME HERE)

(HOSPITAL NAME HERE) HOSPITAL BIRTHING POOL


PLEASE NOTE: I HAVE SYMPHYSIS PUBIS DYSFUNCTION (SPD):

This means that the joints in my pelvis are unstable and painful and I need 24/7 care as I am in a wheelchair and immobile. Clexane injections daily due to stop at week 39: 25th November 2009.


There are certain things that are recommended and certain things that I cannot do during labour and birth; this is to avoid anything that may cause damage to my pelvic joints.

These are outlined in this birthing plan:


BIRTH AND LABOUR:


  • I am in a wheelchair and immobile due to SPD.


  • Clexane 20mg injections have been daily self-administered and are/should be stopped at week 39 in preperation for birth: 25.11.2009. (If it is before this date please ask if they have been stopped.)

  • It is highly recommended I labour in the Birthing Pool and deliver in the water: This is important so my pelvis can be supported at all times and allow me to open my legs and be able to be as mobile as possible for the birth.

  • A hoist is to be used to allow me to access and exit the birthing pool.

  • My husband, (NAME HERE) is also my registered full time carer and is to be present at all times, whatever is happening to me, this includes if a caesarean becomes necessary. (Please bear in mind that I am high risk of DVT.)

  • I wish for my husband and I, to be fully informed at all times about any decisions or discussions about me or my care.

  • I do not wish to have continuous foetal monitoring on admission or at any other stage, unless there is a strong clinical indication to do so.

  • I do not wish for students or any unnecessary person(s) to be present at any time.

  • I would like to use Gas and Air and massage (in birthing pool) as pain relief. Pethidine only if necessary and at no epidural at any time.

  • I wish to breastfeed my baby.

  • I wish my baby to be placed straight onto my tummy and close to me at ALL TIMES including when being cleaned and dressed straight after birth.

  • I have no objections to the injection Syntocinon or Syntometrine being given to me to help the womb contract.




(HEADER:) BIRTHING PLAN (MY NAME IS HERE) PAGE 2 OF 2.



IF A BIRTHING POOL IS UNAVAILABLE:

REMEMBER: I wish to breastfeed and cannot lie/be placed in certain positions.


  • I am high risk of DVT but would prefer to have a caesarean as normal birth is not possible due to the following:


    • I cannot open my legs very far and I need to avoid doing so (sometimes referred to as abduction of the legs.)

    • When lying I need to keep my legs together and I need a pillow between my knees.

    • I cannot stand for very long and cannot get into any asymmetrical position (e.g. standing on one leg, half kneeling, lying with one knee bent up etc.) Not even for seconds.

    • I find it painful to lie flat on my back and cannot open legs for examinations, so will need to be examined whilst side lying or on all fours (with no pain relief so I can explain at all times if a position is too painful.)

    • It is recommended I avoid forceps delivery or any intervention which involves the lithotomy position. If intervention becomes necessary I would like to have a caesarean.

    • I am happy to have an episiotomy only if necessary and if stitching is required it needs to be done by someone who can work whilst I am laid on my side or in a position that is not causing pain to my pelvis.


AFTERBIRTH AND AFTERCARE:


  • Vitamin K is to be administered by injection to my baby.

  • My baby is to remain close to me at all times. (High risk post natal depression)

  • I am very concerned about care after the delivery and whilst in hospital. I will need help with mobility, meals, self-care, caring for my baby and toileting. My husband is happy to provide this as my full time carer, however in any instance this is not possible I will need assistance with these. (If any person(s) at any time are unable to assist me with regards to my mobility, I will need alternatives such as a hoist or whatever else that can be used for immobility.)

  • I wish to breastfeed my baby.

  • I wish for my husband and I to be left alone afterwards when everything has been sorted, to bond with our baby.

  • I would like a cotbed that is bolted or if not possible, placed to the side of my bed, so I can lift my baby out to feed as I will not be able to get out of my bed unaided. I may also need a normal mobile cot to transport the baby and change the baby.

  • I will need all meals delivered to me as I cannot collect meals due to my mobility.


Thank you for your patience and understanding of my condition and birthing needs.

If you are unsure about anything please ask myself or my husband and we will be more than happy

to help you, in regards to SPD and the pain I am in.


Thank you

Updates, DLA, Dr's and household stuff.

Following my last post in regards to the study conducted in the North West of England, this is what has happened this week in regards to my SPD case.

The DLA manager I have been speaking with has had my file back from medical services and the decision maker has decided more information is needed form medical services from the start of monday 19th Oct 09. They will be in touch. So fingers crossed still.

The Dr's have been in touch and I am now speaking with someone in regards to my mental health due to SPD.

We have also been lucky enough to now have a cooker as well as a fridge freezer thanks to the kind lady from the SVP!!! We don't know how to thank her enough!





SPD the study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton!

"Background.

Symphysis pubis dysfunction (SPD) is an abnormal stretching of the pubic joint in pregnancy, which causes distress and pain during and after pregnancy. Measures of its incidence varies widely, and most research has focused on identifying causes. Among healthcare professionals, there is evidence of low levels of awareness of SPD and a lack of sympathy toward women with it.

Aim.

To explore women's experiences of SPD during pregnancy and up to six weeks postpartum, with particular reference to pain.

Method.

A qualitative, phenomenological approach was used in conducting semi-structured interviews in a large maternity hospital in the north-west of England. A total of 28 women were interviewed during pregnancy and six weeks postpartum (51 interviews).

Findings.

The dominant theme to emerge was the women's experiences of pain. Pain was described in compelling language, and some women overdosed themselves on analgesics. Pain was sometimes accompanied by sounds that were audible to others. Living with SPD was problematic in every case, and recommended management for the relief of pain brought little benefit to the women. Most women found coping difficult, felt a burden to family and friends and in some instances feared for their mental health.

Conclusions.

SPD can have a devastating effect on women. Midwives and other healthcare professionals have a duty to take the condition seriously. More research is needed to ascertain cause, to identify more effective pain relief, and most importantly to raise awareness of SPD and increase information and support."


Read more at:

Friday, 16 October 2009

Thursday 15th October: What a day!

We had to set off at 8am for my husband to push me all the way to our new house in my wheelchair which took about 30 minutes so wasn't too bad, although was prettty bad for him as there were bumpy paths, curbs, steep paths upwards and downwards and I can only imagine how much pressure that would have put on his back.

We had to get our electricity key sorted, that took ages as the ladies at the shop were extremely helpful but had not coded a number (tag overwrite or programmed a code) onto a key before.

They did an RTI overwrite and it worked the balance on the receipt had lots of zeros so we didnt know at that point if the key had the balance of £41 to clear the debt that wasnt ours on the meter etc...

Got to the house and thankfully it worked.

The men sorted the gas and electricity (safety check) and my dad had got a fridge freezer from that lovely lady from SVP. (catholic church charity).

It was ages until we got home, and when we did get home I phoned my midwife as I have been worried since sunday as baby has reduced movements, only about 5 in 24 hours. She said we have to go to the hospital for a 20-30 minute monitoring and she would let the hospital know.

Luckily that day my dad was able to come back through and take us and the baby showed me up I think, he moved more in that 20 minutes than he has the rest of that day and the last few days, but I didn't care it was what we wanted to hear, that he is all fine :)

At home when we got back eventually, I phoned DLA and found nothing out so they are calling back today (Friday 16.10.09.) Anyway eventually I fell asleep after a painful and horrific time with my pelvis, all cracking and grinding sensations and agony, and around 23:00hrs the airbed which is supposed to take lot's of weight and which hadn't been blown up for a few days so was softer and a lil deflated as usual decided to pop and whack against my pelvis which i woke up screaming as it was agony and the other side popped as my husband was trying to get me off it.

He had to bring our double bed down and mattress and we settled late on.... still in agony and thinking what else now?!?!

Tuesday, 13 October 2009

No stairlift. No access to upstairs at all: no bath, no shower, no toilet.

Social services and my OT have said that I won't be able to get a stairlift at all.

So I am going to definately be left without a stairlift: access to bath and shower and toilet till 2010, minimum february and maximum 2012.

They expect me to have a quick wipe down downstairs in regards to hygiene and use the commode.

Bearing in mind I am having a baby too, due dec 2009!!!

The charity/church I phoned cannot even help with a stairlift.

We really don't know what to do as I cannot even wash my hair as I cannot do it in the sink downstairs and don't have a table to rest a dish on or anything.

I have a shower seat to get into the shower but that is no use to me if I cannot get to the shower.

I am going to miss out on being a proper mother till 2012 when my childs 2, and thats if i fully recover.

:'( They are taking everything away from me!

:just want to be left alone:

Monday, 12 October 2009

NHS...Why are we paying them (taxes) to murder our babies?

"Baby born two days
too soon is left to die


Wednesday, 9 September 2009

A young mother watched her baby son die in her arms after doctors refused to help because he was born two days too soon and therefore ‘just a foetus’.

Sarah Capewell gave birth to Jayden after 21 weeks and five days of pregnancy.

But doctors refused her desperate pleas to place him in intensive care because medical guidelines state that under 22 weeks a baby is a foetus and does not qualify for intensive care treatment.

Doctors refused to even see Jayden, who lived without support for almost two hours before passing away.

Miss Capewell had complications with Jayden’s pregnancy and did not understand why midwives told her “We just have to get you to 22 weeks”.

Because the pregnancy had not yet reached 22 weeks Miss Capewell was not given drugs to delay the labour or help mature her baby’s lungs.

In October 2008 she went into labour at 21 weeks and four days. Doctors at James Paget Hospital in Gorleston, Norfolk, told her she should consider the labour as a miscarriage rather than a birth.

When Miss Capewell pleaded with a paediatrician “You have got to help”, he replied “No we don’t”.

Begging doctors to consider her son’s human right to life, Miss Capewell says she was told: “He hasn’t got a human right, he is a foetus.”

Miss Capewell’s contractions were continuing when a hospital chaplain arrived to discuss funeral arrangements.

When Jayden was born his mother’s pleas for him to be admitted to the special care baby unit were rejected.

When she asked to speak to doctors the midwife said: “They won’t come and help, sweetie. Make the best of the time you have with him.”

Miss Capewell has now launched a campaign to change the national guidelines for NHS hospitals which state that babies born before 22 weeks have such a low chance of survival that no attempt should be made to save them.

Her Downing Street petition has so far attracted more than 12,000 signatures.

CLICK here to SIGN THE PETITION! or copy and paste:


http://petitions.number10.gov.uk/justice4jayden/


After Jayden’s death, Miss Capewell looked into other cases.

She said: “I could not believe that one little girl, Amillia Taylor, is perfectly healthy after being born in Florida in 2006 at 21 weeks and six days.

“Thousands of women have experienced this.

“The doctors say the babies won’t survive but how do they know if they are not giving them a chance?”

Her campaign is backed by local MP Tony Wright who said: “When a woman wants to give the best chance to her baby, they should surely be afforded that opportunity.”

The James Paget Hospital said it would not comment on individual cases and that it followed national guidance."


JOIN FACEBOOK CAMPAIGN:

http://www.facebook.com/group.php?gid=132686013179


I say: THE DUE DATE THEY STATE IS AN ESTIMATE GIVE OR TAKE 2 WEEKS SO WHO IS TO SAY THE BABY WAS OVER 22 WEEKS? THEY CANNOT SAY THAT OR REFUSE TREATMENT AS YOU DON'T KNOW!!!! MANY WOMEN ARE GIVEN DIFFERENT DUE DATE ESTIMATES THROUGHOUT PREGNANCY!!!! So guideline or not, it makes no sense as the estimate is not accurate!



"Premature births up as
survival rates increase

Thursday, 24 September 2009

Doctors are now more likely to induce a birth early because they are more confident that the baby will survive, according to a new study.

The latest research backs evidence that babies are increasingly surviving after early birth.

The study will add to the debate surrounding abortion and refresh calls to lower the UK’s upper time limit for terminating pregnancy which currently stands at 24 weeks.

Researchers found that the risk of neonatal death from premature birth more than halved between 1980 and 2004.

The rate of premature births also increased significantly between 1980 and 2004, the Edinburgh University research revealed.

The research, published in the journal Public Library of Science Medicine, also found that the number of premature babies rose from 54 per 1,000 births between 1980 and 1984 to 63 between 2000 and 2004.

Scientists analysed data relating to almost 90,000 births in Scotland between 1980 and 2004.

They hope a better understanding of premature babies will enhance treatments for expectant mothers.

Professor Jane Norman, director of the Tommy’s Centre for Maternal and Fetal Health Research at the University of Edinburgh, said: “The increase in survival rates for babies born prematurely backs up decisions by doctors to medically induce births to prevent potential complications.”

The study was carried out in collaboration with Information Services Division and NHS Scotland and funded by the Chief Scientist Office, Scottish Government and the charity Tommy’s.

Last week a new study was released suggesting that mothers who have had an abortion are much more likely to give birth to an underweight or premature baby in the future.

Earlier this month there was a public outcry after it was reported that a baby was left to die when doctors refused to treat him because he was born two days too soon and therefore ‘just a foetus’.

Sarah Capewell gave birth to Jayden after 21 weeks and five days of pregnancy.

But doctors refused her desperate pleas to place him in intensive care because medical guidelines state that under 22 weeks a baby is a foetus and does not qualify for intensive care treatment.

Miss Capewell has since launched a Downing Street petition, which has so far been signed by more than 15,000 people."

And I actually thought social services were here to help people, bigger fool me!

I phoned my social worker, immediately she seemed to want to hang up on me and kept demanding who advised me to contact her. So I told her. She was still then more in the attitude of I cannot help with stairlifts, which was repeated throughout the call. I understand there are notes on her system but it would be nice to have the opportunity to explain our circumstance so she can make a decision as to what to do next if anything.

She kept asking me what I want from her (in different words not that it matters anyway as its plain english) and I kept saying what can you do? Till the point I said well what is your job role??

I have left the conversation with her, more angry and upset than I was prior to it, feels like I was talking to a wall, and that as far as she is concerned she cannot help etc, although at one point she did say over and over again she feels the need to contact my midwife to state about my nutritional needs etc, and that she will be passing a referral to Family Welfare social services department (again forgive me if i have worded that incorrectly) she kept pulling me up on the way i worded things.

E.G: I explained that 'J' the O.T at the social services had said that 2 years is not defined as a long term disability and that I have to hire a stairlift, her response was that she hardly believes that 'J' would have said that and probably said that the alternative is to hire the stair lift.

What is the point in that? Does she 'C' not realise that either way my only option is to hire a stairlift if that is the case??

I felt like she was patronising and talked down to me as if I didn't understand that she couldn't help me or pick up on the fact she wanted to hang up, yes 'C' I did pick up on that fact and I stayed on the phone to try and make you talk sense so I know where I stand.

I did at one point say to her that departments keep passing me from pillar to post, we are banging our heads against a brick wall and they keep saying 'what do you want me to do about it' in which she got defensive and stated that she is not saying that, she is in a grey area here as I am not permanently disabled and she deals with people who are.

Well when I asked what her job role was she could have explained that earlier so I didn't make such a friggin fool out of myself trying to get some advice or contacts to other departments who MAY ACTUALLY be able to help us!!!

Its insane!

I wish I could have recorded the call and typed it all up word for word, so you could see for yourselves her not listening, grasping points and continuing to repeat herself which just incase I wasn't already aware that she was doing that her stating that 'without repeating myself....' and because she was nor here nor there with her sentences I asked her upfront will she or will she not be contacting my midwife (I have good reason for her not to as she was originally contacting her RE: SPD and I kept stating that won't help as the midwife has only seen me a couple of times, I have had a lot of cover midwives, I have had problems with that midwife and her unprofessional statements i.e. ''you are putting you and your baby at risk'' repeated over and over as i cannot walk as obviously it's my fault my pelvis has decided to dysfunction, amongst other things she has said; and that I have found her to be unfamiliar with severe SPD.

'C' responded, I think we had already agreed on contacting the midwife... which we hadn't as I had said the above !!! OMG! I am sure I am speaking english here... someone help me ...…

One thing she advised despite me saying I have contacted community legal aid, benefits enquiry line, job centre etc is to contact welfare rights. So I did today and they hung up as they are busy, they are open 9-3 and said that less busier times may be between 10:30am and 14:30. It was 13:45 when I called. So some good they were...

She also kept saying to me (which really upset me and at one point I did say to her I am getting upset now!! If your condition is as severe as you say it is why have you not been hospitalised. So i told her, they cannot do anything more for me and keep passing me to pillar and post and the nurses on the ward i was on last said they couldn't even help me sit up in bed due to a new policy/law/whatever that states they cannot aid people incase they pull their backs, in which 'C' just repeated the bit about pulling their backs and then went on to repeat about not helping me with the stairlift, and if she did read this blog at any point I am sure we obviously didn't have the same conversation so I assume she would have a different recall on what was said anyway.

So great help.... yeah thanks. What are you paid for again? Oh helping permanently disabled individuals, which would have been useful at the beginning of the call along with SOME DETAILS about who the h*ll can actually deal with ME then!

-Frustrated and upset.

I had told her during the call that I am now depressed as any sane person would be and at the end of the call I said that sometimes its nice to be able to talk to someone to seek advice in which she interrupted me with: Well, you have your husband haven't you?

So I replied with: yeah but I am sure he is as upset as I am and needs to probably talk to someone himself, to which she then said:

Well you have said you had psychological intervention in the past haven't you? pause... without repeating myself I suggest you see your GP (as i already said i was) and tell him. (as to infer that she doesn't want to know and again talking down at me, has she not read up or had training in sympathy, respect or even transactional analysis???) She may as well have just said, I am not a counsellor I don't care it's not my problem....

Thanks!

My husband heard the call and his response is : "Why the h*ll didn't you just hang up on her in the first place?"

I guess it would have made no difference if I had, I may have felt a bit better at least if I had!

Sunday, 11 October 2009

06:39 am and as usual sleep deprived and in agony and crying:

For the last few weeks my pain has got worse (it was always constant) but now it's much worse and it is keeping my husband and I awake.

I am sick of all this torture, it's bad enough being in pain all the time but thinking about if that person sat behind that desk at DLA who needs to make an opinionated assumption as to whether they feel I need 24/7 care without sending me a medical assessor experienced in severe SPD, declines me again despite factually needing 24/7 care our lives will just get much worse as we are not eligible for anything. It's not like we can say, oh OK then, our bad.... my husband still cannot work, I still need 24/7 care and we have no choice but to appeal again to take it to a tribunal.

I have sent them confirmation in letter form from my G.P stating I am likely to have it months after the childbirth due to the severity of my SPD, documents on minor (some areas severe) SPD and requested a home medical assessment in an essay of a letter about my individual case.

All we can do now is sit and wait with our fingers crossed they can see the proof is there!

In the meantime, our lives have fallen apart and I am now depressed so need to speak with someone.

Any sane person having everything they ever worked for and owned ripped away from them and leaving them bare when they are pregnant and in need of food etc. due to a disability they are likely to have for a minimum of 2 months up to 2 years after childbirth that was just sprung on them and not their fault would feel the same.

I am worried about others, what would happen to a single mother expecting that needs 24/7 care if she has not got anyone to look after her and social services cannot provide the care she needs, and who would be there to help her look after the baby as it is not her fault if she gets SPD that causes all this??? Would they leave her in the same position as us? Without a bath/shower/toilet? Without a home (luckily we have a roof over our head as we have gotten a council house) and without carpets (stone cold concrete floors) and without financial help for food/bills/rent etc???

We're out of options.... ring DLA on thursday but don't hold breath...


Saturday, 10 October 2009

Catch 22!

My husband has been offered a job position, we don't know when it would start as it may even start next year but just incase it was to start immediately we phoned social services who cannot provide 24/7 care and only do pop out visits (the problem is its during the week full time) so he cannot even do that as he needs to 'babysit' me.... Everything keeps making me feel like a problem.

My husband however has said that I come first and I cried into his arms for a bit, I love his cuddles, and that as it is a fact that I need the 24/7 care he is not going to jeopardise my or our unborn baby's health just because others cannot see nor accept this fact.

I am in agony now and we have not slept right for 5 nights in total now due to my pelvis pain. I am sick of the commode but I guess I have to get use to it anyway as the new house doesn't have a downstairs toilet and the social and others have said I don't need one as I have that. I wonder how they expect me to shower! In the garden with a friggin hosepipe? I feel so let down by the system and the society we have paid lot's of taxes too and have worked for since 15/16 years old.

I feel so dehumanised.

I don't think we will go to the media just yet, we will await the decision from the DLA as I have sent all the evidence and contacts I can and asked for a home visit they need to make a decision and I am eligible so don't see why they won't see that.

The media would probably be more stressful as it would just be look at this disabled loser and her poor 'slave' husband, who are having a baby in 7 weeks 3 days and cannot afford food and she cannot bath or shower.... who have lost their house and aren't getting any help, who's stuck in a wheelchair...etc

:(

Friday, 9 October 2009

Ok... so no help they lied... we're in crisis! No wonder society is depressed and suicidal.

Seriously considering swallowing whatever pride and dignity I have left if I have any left now, and go to the media... to let the media know what the system are doing to people.

I can see myself seriously ending up in hospital as no one can help us.

Because I have this disability that is SPD I need:

A stairlift = cannot get help for one cannot rent one due to financial situation and due to L shaped stairs.

The internet: Costing us £60.00 to move to our council property to avoid homelessness. (we have to do online shopping/banking/the only communication i have with the outside world etc)

The phone line for emergencies and the internet: £122.50 cost from BT as the council house doesn't have any wiring or a phone socket/access.

The key meter is no good as we cannot top it up due to my care so Npower were willing to change it for free as we have been customers for nearly 2 years but take 28 days from the date we move in, and they said the gas and electric are with powergen. The lady I spoke to was exceptionally rude and due to what she said to me today we are no longer going to be a customer of theirs for any longer.

Called Powergen they more helpful and they said that they could make me an account now as the property is empty and say I moved in there today to get me a credit meter for the 23rd when I move in the 19th due to my disability they have waivered the fees, bless them so someone is helpful in this society of sh*t.

The credit meter for the gas is not with powergen it is with british gas so we need to sign up to british gas today, which we havent yet as the following has happened:

We received my husbands claim for income support as he is not working and some of the questions he answered have been typed up incorrectly and some questions he answered they have left as 'unanswered'. So we phoned the number they gave us to sort the claim and confirm the move, this number was the job centres so the department that deal with the claim have got it all wrong. New claims on wednesday when we applied said it was out of their hands at the end of the call and we need to phone the claims processing dept.

Having phoned the job centre ( the claims processing number they gave us in black and white on a letter) they gave us an 0845 number to call instead saying it was the wrong number.

We phoned them, and they said the claim would only be declined as he is not eligible as my DLA has not gone through and he is not on carers allowance which he cannot get until my DLA is accepted (but they have no clue about severe SPD) and I cannot get it as I am on higher rate M.A £23.06 a week over what the govt. reckon a couple can live on, and he cannot even go on JSA as he cannot work as he cares for me and cannot get to the job centre once a fortnight without having to take me there and pushing me all the way in my wheelchair (only people in wheelchairs will understand the problems that we have with curbs, bumps, steep footpaths, no footpaths, weather, and traffic etc). If my husband went on JSA and did all of that he may not get a penny as it is contributions and I earn 123.06 a wk non taxable Maternity Allowance. So we would be signing on for nothing.

We phoned crisis loans, they keep hanging up on us saying they are busy.

We phoned DLA and a nice gentleman took over as I broke down over the phone worrying about my baby and the fact I will end up hospitalised if I don't get the help I am eligible for, and he passed my file (will refer to him as 'S') to the decision maker who needs more medical advice who is passing it on to a medical team that work for the DLA that they cannot give a time limit to. So 'S' has requested I call back thursday to see what progress if any has been made.

If they falsely decline me again I will just have to go to the tribunal and I'm panicking now as that will take longer.

We need for our new home also:

a cooker
carpets
stairlift so i can access bath/shower and toilet
money for food
money for rent for the council house
money for bills: gas, electric, water, council tax, home insurance, crisis loans payments, flexiloan payments, overdrafts interests and so on....

...and these things we won't be able to sort without any benefit help till we get back on our feet and back into work...

We have a baby due in 8 weeks if not born premature...*fingers crossed he stays in there as that would really be the cherry on top...*

On top of all this, there is my constant pain/agony! The fact I am now a useless painful immobile blob, depressed and the fact we have to move... so need to sort things out.

A friend I made who also has SPD severely has offered kindly for me to bath at hers and I feel so sh*t already and like a charity case, I cannot be dehumanised in my situation more. I am however extremely grateful that she cares enough to help us as such and I will have to take her up on her offer soon as I am so depressed now... and need the help. She has been fantastic, when there was no social services, o.t's or anyone to help yesterday she phoned me and we vented for about 2 hours nearly and I really appreciated it!!
She's a godsend.


So if you see me on T.V. as I have nothing left to lose or hide, spread the word about SPD and disabilities in general as well as benefits as people deserve help in general whether they work or not.

Just because I married someone under 25 too we were not eligible for working tax credits, so it looks to me girls like the government want you date older men to have the help you will need to survive outside of school even if you manage to get a job, unless you have lot's of children and a partner over 25 or bceome a single parent, which I don't think that it's fair we as women are given those options to survive!

....sooo desperate, down and confused and scared for my baby!







Thursday, 8 October 2009

No cooker, no access to toilet, bath, shower, no help....

We went to view the council property today and we have accepted it as we have to.

We have no cooker and as it is a council house theres no carpets/wallpaper/decor at all, there isn't even lightbulbs lol but we can sort lightbulbs.

The council told me that they don't have any bungalows for elderly let alone for disabled and that if I sent my information to them about my medical needs the only houses they can offer me are two bedroomed properties in which all two bedroomed don't have downstairs toilets. So we have taken this two bedroomed property.

Only three bedroom properties have downstairs toilets and with the problems I have had I don't think I will ever be able to have a second child. I need to be able to look after my first and at the moment I need 24/7 care myself and life really sucks!

I am just worried and sick of all this verbal promised help and support and there isn't any at all. I phoned my O.T who is not available and her colleague stated she wouldn't be able to help me RE: stairlift anyway and then when I phoned Social services I already knew my social worker was not there from adult services and they couldn't help me either and whoever I ended up speaking to was saying that I am not eligible for a stairlift as my condition as severe as it is may only last two years.... 'only'? That has angered me sooo much, so they expect me not to bath or shower or have access to a toilet for 2 years when I have a child on the way just because this condition has sprung on me???!!!

I may have to hire a stairlift but they are expensive you have to pay for the full year in advance and it wouldn't be available for the stairs in the house we have gotten as the stairs are an 'L' shape and the hired ones are only suitable for straight stairs so yes I have been crying all night and I am still crying now.

We cannot afford to stay here, and I cannot get upstairs here anyway so it's homelessness route to a two bedroomed council house the same or it's we take this one and have a roof over our head but I continue to suffer.

How do these things just keep happening to us!!! They are completely beyond our control!!!

We are under 25 so not eligible for benefit help so have worked all the time even when I had endometriosis and unable to keep down a job I still managed to get through interviews and convince employers I was worth employing then got fired and vicious circle again. We have always been in private rented accommodation as we worked hard and I started a business, my husband was employed and now.... we are both unemployed through no choice of our own, I am on maternity leave and will need to seek advice and financial help on re-starting my business that is if I can even restart my business, and I am disabled in a wheelchair that could take up to two years, and all this happened at the worst time, just after I was 16 weeks pregnant with a miracle child we were told we could never have as I couldn't ever have children and luckily conceived on Clomid.

So yes they are expecting a pregnant married woman who has worked since 16 years old and went to college as well till 19 who started a business, who's husband has been and prefers to be employed to have NO ACCESS to a toilet or a bath/shower. Let alone give us help for a cooker??

What in the world are we going to do.

I don't want to be a friggin charity case and have to beg people to donate a cooker but what are we going to do?? The carpets and wallpaper can wait, but a cooker we need!!! How am I going to be able to eat properly for the sake of my unborn baby!! :'(

I don't know what to do, I am stuck in a non-self propelling wheelchair, in pain, helpless, alone, tired, my husbands practically an unpaid slave (at his own will) due to my stupid pelvic condition when he should be able to be a husband and have a life of his own and we have a baby on the way.

*sobs* I just want to be left alone tonight.... really, really depressed....

Wednesday, 7 October 2009

Life a Yo-Yo? You couldn't write this stuff!

Had problems this morning with transport to acupuncture as the receptionist at physio hadn't acknowledged that I was in my own wheelchair and even though she confirmed (last time we were there) we needed a drop down back for wheelchair access, booked an ambulance that was not suitable for wheelchairs, had a ramp-drop down access but no wheelchair clamping facilities to transport me.

I was in tears this morning. She did rectify it as I begged her to so I could get there and we did manage to get there so I am grateful however her apologies and attitude was very half-hearted, rude and negative and really upset my husband.

Had acupuncture and got home, council called thankfully and is trying to sort out our council tax mysteries, so we were relieved.

Then my husband was called to say he has lost his job so we got upset... again.

My husband has had to apply for Income Support as carers allowance is no go as my DLA is pending and cannot go on JSA as he would have to bring me every fortnight to attend for signing on and can only search for 3x 12 hour nightshift or the equivalent positions over the weekend.

Then... we got a call to say we have been offered a two bedroom council property which is fantastic but they are uncertain whether I could get a stairlift in or not. SOooooo we need to wait and see and I will ask my O.T to view it with us. It has radiators!!! yay!!! no more ducted air heating :)

Soooo we are indeed plodding along and in this mish mash of juggled circumstance we are hoping to get back on top and in control...soon.

Let's see if this SPD pain eases with the acupuncture, Physio said I may have better night sleep tomorrow night if not tonight and that I will have one more session before they review whether it is suitable or not.

*fingers crossed things work out*