Question: lack of disability understanding:
I got asked a question today on my facebook wall (not inbox) openly about Disability and I do not mind as I am a strong person when it comes to things like that and did not take offence but i warn you some disabled people will.
Remember not everyone knows even anything at all about disabilities so I am happy to post the question and my reply on here! I am here for anyone who needs me on my facebook support site and will help those that are worried about SPD and help make sure SPD sufferers whether previously unaware they were disabled, previously disabled or even not disabled at all, know what help they are entitled to, who they can go to for help and hopefully prevent SPD and / or DSP developing into a lifelong uncurable disability in itself:
Q: This was an open and public question posted on my wall (visable by every internet user) therefore I will post it as it was: (to help answer peoples concerns about SPD and Disability and any further open questions can and will be posted on here to help others understand if i feel there is a point to be made and people will be helped and i believe this question is genuine and needed to be addressed:
"Emma She-ra S*******n (Name was supplied by facebook to show who posted on my wall and I have censored the surname for privacy purposes and can remove more at the request of the individual):
hi there i no i aint wrote to you in the past but i was just reading through and was woundering what your disability is all about and how you class your self as been disabled i no a lad that got both his legs blown off in afgan and he can drive get up stairs without a stair lift as he sits on his bum to get up also he ...manages to get a bath and go to the toilet. i might be wrong but im only asking as i dont understand SPD plz could you explain thanks"
A: This is my open and public answer regarding the issues brought up:
"I have Ehlers Danlos Syndrome and Hypermobility syndrome which caused severe SPD (20%) in pregnancy which is a pelvic misalignment which can be made permanant and affect someones mobility if they do not get the facts and help they deserve and clearly need from professionals such as Osteopaths, Chiropractors and Physios that do manual therapy.
I have just had a stairlift put in and ramps now but i, my son and husband has lived in our living room for a total of15 months... the whole story is at http://pgpandspd.blogspot.
There are different variations of mobility impairments and so many different disabilities, and the 20% severe SPD sufferers are more likely to have an underlying joint or other disability causing the SPD soon (sooner than the 3rd trimester) as 9% of women can have spd and suffer from joint pains etc from conception according to NHS NICE guidelines.
You can read the blog/info site and gain more information and personal experiences from other people on our support group, links provided on my blog site.
Hope this helps.
Also, you cannot judge one persons disability from someone else who is disabled that you know, different people can and cant do different things...."
Remember not everyone knows even anything at all about disabilities so I am happy to post the question and my reply on here! I am here for anyone who needs me on my facebook support site and will help those that are worried about SPD and help make sure SPD sufferers whether previously unaware they were disabled, previously disabled or even not disabled at all, know what help they are entitled to, who they can go to for help and hopefully prevent SPD and / or DSP developing into a lifelong uncurable disability in itself:
Q: This was an open and public question posted on my wall (visable by every internet user) therefore I will post it as it was: (to help answer peoples concerns about SPD and Disability and any further open questions can and will be posted on here to help others understand if i feel there is a point to be made and people will be helped and i believe this question is genuine and needed to be addressed:
"Emma She-ra S*******n (Name was supplied by facebook to show who posted on my wall and I have censored the surname for privacy purposes and can remove more at the request of the individual):
hi there i no i aint wrote to you in the past but i was just reading through and was woundering what your disability is all about and how you class your self as been disabled i no a lad that got both his legs blown off in afgan and he can drive get up stairs without a stair lift as he sits on his bum to get up also he ...manages to get a bath and go to the toilet. i might be wrong but im only asking as i dont understand SPD plz could you explain thanks"
A: This is my open and public answer regarding the issues brought up:
"I have Ehlers Danlos Syndrome and Hypermobility syndrome which caused severe SPD (20%) in pregnancy which is a pelvic misalignment which can be made permanant and affect someones mobility if they do not get the facts and help they deserve and clearly need from professionals such as Osteopaths, Chiropractors and Physios that do manual therapy.
Unfortunately for SPD sufferers 1 in 4 non disabled women get SPD to some degree during pregnancy and since it can lead to DSP (back of the pelvis) and become permanant I want to make sure people get the info and help to prevent such complications.
For people like me who have had an undiagnosed disability from 14 that worsened to become a mobility impairment during pregnancy and cause uncurable SPD and possibe DSP (waiting for stork/asymmetrical scan) my mobility is severely impaired and because my joints are a problem i can lock up and become completely immobile and I am in constant chronic and severe pain.
I am on higher rate of DLA for mobility and Care, my husband is my 24/7 carer and does the majority of my care, i dont wish to go into that, and i am in a wheelchair, cannot use stairs, cannot walk unaided and not for long distances if and when i am able to stand and move a bit, i have better days, and bad days, depends on my condition as physio and exercise has an 80% of damaging something or causing pain which does not catch up to me till about 3 days later, i am registered disabled and awaiting a blue badge.
For people like me who have had an undiagnosed disability from 14 that worsened to become a mobility impairment during pregnancy and cause uncurable SPD and possibe DSP (waiting for stork/asymmetrical scan) my mobility is severely impaired and because my joints are a problem i can lock up and become completely immobile and I am in constant chronic and severe pain.
I am on higher rate of DLA for mobility and Care, my husband is my 24/7 carer and does the majority of my care, i dont wish to go into that, and i am in a wheelchair, cannot use stairs, cannot walk unaided and not for long distances if and when i am able to stand and move a bit, i have better days, and bad days, depends on my condition as physio and exercise has an 80% of damaging something or causing pain which does not catch up to me till about 3 days later, i am registered disabled and awaiting a blue badge.
I have just had a stairlift put in and ramps now but i, my son and husband has lived in our living room for a total of15 months... the whole story is at http://pgpandspd.blogspot.
There are different variations of mobility impairments and so many different disabilities, and the 20% severe SPD sufferers are more likely to have an underlying joint or other disability causing the SPD soon (sooner than the 3rd trimester) as 9% of women can have spd and suffer from joint pains etc from conception according to NHS NICE guidelines.
You can read the blog/info site and gain more information and personal experiences from other people on our support group, links provided on my blog site.
Hope this helps.
Also, you cannot judge one persons disability from someone else who is disabled that you know, different people can and cant do different things...."
MORE from me:
MY condition has been diagnosed verbally by 2 health professionals and i will have evidence soon as I see a Rheumatologist on Monday.
I attended a course today for people who need to know how to cope with pain and living with long term conditions ran by the NHS. I have found this useful and suggest other people that need help discuss this with their Dr.
As you may have read our battle for the stairlift is over although my upstairs bathroom has a plasterboard wall seperating the bathroom and the toilet making both too narrow to access and the bath is smaller than standard baths and will not fit a suitable bath lift and will therefore need to be changed as the wall will need to be removed, we are working on solutions for these now.
It is a lot nicer being able to sleep upstairs and we may still have a way to go but I enjoyed my birthday very well due to the fact we now have a tidy, uncluttered living room with no beds or cots and although we have a lot to do we are finally allowed to have some amount of happiness entered into our lives...
I have my assessments further regarding the powered wheelchair so soon we could be completely finished and able to live a normal and respectful life with the right level of living conditions and accessibilty for me to feel more normal as opposed to being reminded of restrictions due to my mobility impairment....
We changed GPs and our new GPs have been more than fantastic and Social services have been very helpful the last few months and we are thankful for the stairlift and Ramps, so finally it is nice to say something positive and say a Thank You to social services.
Not wanting to put a negative on that but the point of the stairlift was still to access the only toilet in our house which is upstairs and access and use the bathroom also, but..... I know these are ongoing but atleast they are being addressed and we eagerly await closure!
From the meeting we had 1st March, some things that were promised have happened:
-Stairlift
-Ramps
BUT... these are ongoing:
-Powered chair
-Toilet access
-Bathroom/hygiene access
AND these have not happened at all:
-Transport to places I was promised access
-Promised access to a bathing facility
-Hydrotherapy pool
-Gym
-Community bus/transport
etc...
So as you have now been updated, I do hope this will help you see what we have gone through, what is yet to come and what has not happened at all!
Right now my knees are killing me so much and my elbows and wrists are second to that with the front and back of my pelvis being really angry.
I do think it could be down to hormones released from my new Implanon contraceptive implant, upper left arm, as my condition worsened during pregnancy and prior to that I had pain and problems in cold weather, during and around my periods, warmth helped the pain and we will have to see if this gets better soon.
I want to make it known that I want to prevent what we went through and enforce and ecourage helpd and understanding to SPD and or pelvic/joint sufferers during pregnancy and more.
Another plus is that I have finished my complaint regarding what happened during my pregnancy and the treatment *coughs* lack of treatment as well as how we were treat. I hope this is thoroughly investigated and prevents the suffering of more women.
