I really hope things start looking up soon,
Ellie

Our daughter suffers from Chronic Dyspraxia, to the extent that she cannot ‘feel’ her own body in the normal way, you’ve all seen that documentary where disabled people trekked across South America, Liam was on of those people. he suffered from Dyspraxia. Our daughter’s symptoms are even more far reaching, she has been bullied at both her previous schools because she is ‘different’ Different is apparently ‘bad’ when you’re 5, 6, 7 or indeed an 8 year old child.

In her previous school the Headmistress De-Registered her rather than deal with the bully. As a result we had our one salvation. Our daughter is now in ‘the’ best school for her, she’s doing better academically, but in general she’s doing well. She actually has friends for the first time since starting school! Proper friends, all due to the staff in her new school.

However, since we live outside of the catchment area, the council/LEA whomever is responsible for these decisions, deemed us unfit for any financial help. We cannot afford to ‘taxi’ our daughter to and from school. My husband is based in Devon where we are, but he travels a great deal on business with his work. He covers a vast area, Asia, Europe and America. He’s recently had a Far East Trip, covering three countries, a trip to the US, he was supposed to be away for two weeks, but the trip was cut short when I was in so much pain that I couldn’t take care of myself. Thankfully his boss is a wonderful man and thinks first of family and at great expense brought my husband back home 4 days early.

Since then he’s had a trip to Germany, another to Italy and this week it’s Germany again.

I think my husband feels guilty because this all started when I expecting our daughter, he also I suspect feels guilty when he goes away and knows that I’m not well.

More often than not I can manage. I’ve been told that I should have seen a chiropractor immediately, but was told by the medical profession both here and in Switzerland (where I lived at the time) that things would right themselves within two years, yet here I am 9 years on.

I take anti-inflammatories almost daily, if I ‘can’ avoid taking them I do, but recently I’ve had no choice. The pain has been so bad, that I’m also taking paracetamol and ‘was’ taking codeine, which at least allowed me a sort of reprieve whist I slept for approx. 2 hours.

I have large black circles under my eyes through lack of sleep (Panda springs to mind)

I am vastly overweight and doctors think I can just ‘magic’ it away, that I don’t ‘try’ hard enough. They think I’m exaggerating when I say that even walking hurts my hips and if I walk in a crowd, someone merely walking in front of me un-expectedly can reduce me to agonising pain. It’s like a ‘tearing’ sensation right down low in my symphysis pubis I’ve been told, although I’ve had many and varied opinions.

When I mentioned recently to one of my GP’s that I was seeking the help of a chiropractor, she suggested I didn’t. She’s a very good doctor and I perhaps unfairly told her I was going anyway, I say unfairly because I didn’t actually listen to her reasoning as to why I shouldn’t go!

Unlike another doctor in the same practice, she has been very supportive, however I’ve hardly spoken to her about my SPD.

Approx. 5 years ago, I approached a doctor in Tiverton, here in Devon, where I lived at the time. He was super, I found someone who was actually listening to me. He took away the DLA forms I’d filled in with him and read them at home. At my next appointment he told me he would support my application for DLA 100%. (I was overjoyed! his support meant that I did indeed receive DLA for all of one year!) however we’d been given to believe that we would have it for longer, on that information we leased a car for 3 years. A small A Class Mercedes, it was wonderful because it was slightly higher than a ‘normal’ car off the ground and it had leather seats, which meant getting into and out of the car was easier, I could just slide in without hurting myself. We then moved house to a smaller village and subsequently needed to move doctors.

I made an appointment to see a ‘lady’ doctor, thinking perhaps that she would be more understanding. I was then refused DLA and when I looked into it, I was told that it was something to do with the doctor’s report. I asked for a copy of the doctors report.

Please understand that this doctor did not know what SPD was, she had never come across it before. However I took in with me a whole ream of information from the British SPD Organisation and asked her to look through it. I don’t think she even bothered to read it, or my application.

When I received a copy of her report it said this

“THE PATIENT ‘CLAIMS’ TO BE IN PAIN”

That was it ……. I was turned down immediately. We then had to ‘find’ two years worth of £359 pcm, the car went from a necessity to a millstone around our neck. We couldn’t afford it, nor could we just send it back because we were contracted to lease it for 3 years. Never again will we lease a car, we learned a hard lesson.

I was proud, I didn’t WANT benefits, I wanted to support myself and had been made to ‘feel’ like I was taking something from the state that I wasn’t allowed. I worried that if I had a ‘good’ day and I managed to say carry a few bags in from the car, that I was somehow NOT ENTITLED to the DLA. This happened the whole time we were in receipt of it. So when this doctor didn’t support me, I didn’t PUSH to have my case re’assessed.

I think the doctor re-acted to an off the cuff remark I made, I told her that I need a car because of where we lived and I had said that with the help of the DLA I might be able to get that. She didn’t look any further. I didn’t just WANT a car, if I could have my life back, the life I used to have, I’d swap it any day of the week, I’d swap being 18 stones with the 10 I used to be any day of the week, I’d rather WORK than be on benefit, did she really think it was as simple as that? I just wanted a nice new shiny car!!!

I used to be a gymnast, I used to play squash every week, I used to be fit as a lop and now …… well now I’m a shadow of my former self, at least in my athletic abilities. I’m almost double the size I was through lack of exercise, but it’s not because I don’t want to ….. it’s because I can’t.

I’ve had Frau Apfel in Switzerland giving me physio and telling me I wasn’t trying hard enough, even when I suffered a water infection and ended up overnight in the Kantonspital. She always said I didn’t try.

I then found a wonderful private physio whom I believe ‘could’ have helped me if I’d known that my pelvis was way out of alignment. I felt as if my right leg was shorter than my left because my pelvis was lower on the right than the left and twisted back.

In four weeks, it’s MIS-ALIGNED itself three times. The Chiropractor has asked me to come back in two weeks, she left it up to me. Our money from the HSA has almost run out for chiropractic apointments anyway.

Today I saw my husband drive our daughter to her riding lesson, rush back to do the washing and shop for our weeks groceries and put them away. he’d only just stuck some pizzas in the oven when I heard a crash and expletives.

He’d dropped the pizza. I felt dreadful because I can’t even stand up without his help or our 9 year olds at the moment. I went upstairs and sobbed for all I was worth.

Despite all of this, I would not swap our daughter, she is beautiful inside and out. Her new school know that she works very hard, she never gives in no matter what and she is very well behaved and polite.

They now know beause they’ve had her some time that her previous school’s insinuations that SHE was the bully is all make believe. She is the gentlest of souls.

Recently I feel have been vindicated. I was accused along with our daughter of being the aggressor too. Total falisy made up by the mother of the bully who also worked in the school!

I don’t actually know why I’m writing here today, except perhaps I was considering an operation that doctors in Switzerland told me about some 7 years ago. They told me that I could have a metal plate fixed to my pelvis to stabilise it, but that it ‘might’ cause me even more pain than I was already experiencing. I couldn’t envision more pain, so I didn’t take them up on it.

However I am at my wits end. my daughter is not in school because of my disability. I receive no help from the state whatsoever. My daughter has a ’small’ DLA payment because of her Dyspraxia, which barely helps.

Today was the last straw. I feel so guilty, not being able to contribute, not working, even though I have trained and have been a working Reiki Master Teacher for the last 8 years. (another long story for another day)

I’m sorry this has turned into an epic saga! I suppose I’d like to know if anyone else has experienced SPD to this degree and how do they cope, also if anyone HAS HAD THE OPERATION to stabilise their pelvis and what are they like now.

LASTLY TO ANYONE READING THIS, if you are experiencing any pain during or just after childbirth, or before even as I did, please seek help ASAP, that is the first thing I can tell you and NOT EVERYONE IS THE SAME, this is obviously my own account, but not everyone has symptoms as severe as mine.

I had a large baby, or so I was told, they kept telling me she was going to be 11lbs!!! when she was born she was a beautiful 7lb 12½ ozs about two months in I started to experience pains in my inner thighs, like I’d had a really good work out at the gym, or I’d had a damn hard game of squash. Anyone who plays squash will know what I mean then a few weeks later, I started to feel like I had no support in my stomach.

I was told that I couldnt’ possibly have SPD by my then GP in Lancashire, as that only happens to people who are in car wrecks!!!

Then I saw a consultant obstetrician whose wife also suffered. He ordered a special belt for me …… but HERE’S THE THING, they didn’t have my size and so gave me the WRONG size. I ended up on crutches the last few months and then the birth was brough forward because in the end. i was unable to even make a cup of tea for myself and I was in so much pain, that waiting another three weeks wasn’t an option. I had an elective C Section, the day after my daughter took seriously ill and we almost lost her. She was in SCBU for 4 days where she fought for her life. her right lung had collapsed.
Luckily she was a little fighter

I’m so sorry this has all come out like this. and if you got this far THANK YOU FOR READING

Maia