May 24, 2008 at 8:06 pm (PGP, SPD, hospital, rant)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, dsp, national health service, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, pelvic surgery, pelvic pain relief, painkillers, new medication, meds, SPD injection, PGP injection, SPD treatment, PGP treatment, DSP injection, DSP treatment, hospital tagged analgesics
Well, I’m lucid enough to type, and grateful for that small blessing. Am rather less grateful that my tiny son doesn’t understand why Mummy cannot have him crawling all over her, or even using her as a handily placed standing-up aid, as she keeps laying on her fold-out bed that is so conveniently situated on the floor! Am rather more grateful than I know how to put into words for the Michael in my world who tirelessly looks after both mischievous son and moaning woman.
Yesterday - the news in as brief as possible.
MRI went smoothly and well. Henry was deposited at Michael’s parents for a sunshiney day of frolicking, and after some award-worthy bus timetabling, Michael and I met at the hospital at 12:20 or so. We found our way to X-Ray reception well before 12:45 and were taken through to begin the scan in good time. The scan itself was actually ok. Quite painful getting myself aligned correctly on the table, and then when the board was balanced on my pelvis, the look of stubbornness on my face was the main thing stopping me from crying out at the sudden weight in the most tender of areas! But, 40 odd minutes and many strange noises later, it was over and I slowly made my way back to my own clothes (attractive as hospital gowns are… at least I’m now thin enough I could wrap the small ties around my waist so no back nor buttocks were on show!) and Michael.
We sat in the concourse, ate WH Smith sandwiches, and waited until 14:50, at which time it was back to X-ray main reception to present my next letter to the receptionist man. He tapped something into his keyboard and directed us to Paediatrics. Yes, you did read that correctly. Off to Paediatric Radiology we stumbled, “You’ll know it by the big pink octopus!” we were assured. And it’s true that we did. Though it did seem to me that pink wasn’t such an important detail as it wasn’t as if all hospital wards had other coloured octopi heralding their existence. Surely just the mention of an octopus would have been enough?
Anyway, I digress.
At 15:00 I gave the pink hoodied receptionist my appointment letter. At 16:55 I went in to have the injection. Inbetween, I did keep asking if I was next, every 25 minutes or so, Each time I was assured that I was… each time, I was not. I did manage to get one of the receptionist’s nicely padded swivel chairs to sit on for the last 40 minutes or so, though, as Michael asked for a more suitable seat for me! Fair enough, I was in bucket loads of pain.
Woman who performed the procedure was fantastic. Told me I was much better than the rugby players she normally does these injections on. It didn’t go too smoothly, though; the first anaesthetic injection went in very painfully, but easily enough. The actual steroids were less wonderful. 3 attempts failed, so more anaesthetic was given… all of this was incredibly painful, though I tried my hardest to remain silent. Finally, it was done. Incredibly dizzy, numb but in pain, I left - happy to be rid of the place.
“48 hours til all that anaesthetic properly wears off, then probably 48 hours of discomfort for you. Take it easy, it’ll be 4-6 weeks until you know whether it has been successful. Carry on taking your medication as normal.” Condensed, the advice I was given. Not exactly a quick-fix solution, then. Let us hope for the best, in any case.
Oddly, I also received a letter from the Medical assessment people for Disability Living Allowance: apparently their doctors have looked at my file and the fax from my doctor asking for a home-visit instead of me going to their centre, and they’ve suddenly decided that I don’t need a medical assessment at this time. Odd. Have they decided to take me seriously, or totally discounted me? If option 1, hurrah! If option 2, I will appeal against the decision.
Lots is going on.
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May 22, 2008 at 1:53 pm (PGP, SPD, hospital, rant)
Tags: chronic pain, depression, dsp, DSP injection, DSP treatment, hospital, hospital tagged analgesics, meds, midwives, national health service, new medication, nhs, orthopaedic, orthopaedic surgeon, painkillers, pelvic girdle pain, pelvic pain relief, pelvic surgery, PGP, PGP injection, PGP treatment, physio, physiotherapy, pnd, post natal depression, post traumatic stress disorder, postnatal depression, ptsd, rant, referal, sacroiliac pain, SPD, SPD injection, SPD treatment, symphysis pubis dysfunction
The big day is almost upon us: I am excited about the prospect of less pain… but more than slightly terrified of the initial pain of the injections and the fact that it all may not work at all and then “merrily” back to the drawing board we all go. Not a fine prospect, but a very real thing that may have to be faced. The way I look at it all, when I’m feeling happy-ish, is that I’ve made it this far so a bit further with this pain probably won’t kill me.
Obviously, there are far more pessimistic views that I could, and often do, take. Par example, the pain brings me down so far in myself that my grip on reality loosens irreparably, the pain continues to get worse and I end up in a wheelchair and without options for recovery, or that I end up losing Michael and Henry either through the previous reasons or just that I am holding them back from life with this condition and as they deserve better they move on.
See what an utter travesty this would fizzle into if I let my more depressive side break free and take control of the keyboard?
I have to imagine bards bidding me, “Good luck, fair Elizabeth, may the National Health not inflame thee, cause undue pain or bring forth an allergic reaction from thee.” …and why not, it could happen?
Y’all gotta love them ol’ bards.
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May 19, 2008 at 9:14 pm (PGP, SPD, hospital, rant)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, dsp, national health service, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, pelvic surgery, pelvic pain relief, painkillers, new medication, meds, SPD injection, PGP injection, SPD treatment, PGP treatment, DSP injection, DSP treatment, hospital tagged analgesics
Less than a week to go until scanning and injections! Yay?
Henry can now wave and say “Hiya Mama!” to me, and “Hiya Dada!!” to his lovely daddy! We’re oh so proud and looking forward to showing him off, like the beautiful performing monkey he becomes in front of our relations: he really is a confident little thing! So smooth and squidgy and beautiful too, of course, but we’re glad he’s not frustrating enough to only do wonderful things at home, and never in front of his easily delighted grandparents! He also cruises around rooms using only the furniture to balance him, oh terror that he is!
I really hope that this treatment works for me; Henry’s not even 9 months old yet and he’ll literally be running rings around me before long. He can already crawl approximately 8 times faster than I can walk.
So, I telephoned the good people at the Cardiff centre for Atos Healthcare asking whether the fax-of-wonder from my GP (or close approximation of, at least, as my preferred GP is on holiday) had been received and, if so, when is my home-visit appointment going to be, please?
Five minutes of paper rustling followed me giving out that all-opening password of my National Insurance number. “Ah!” I heard a proud exclamation, “here it is!” In the more business-like tones that followed I was told that my file and fax were awaiting inspection by one of their doctors on site and I would hear back from them as soon as that inspection had taken place. Needless to say, if I haven’t heard from them in the next two days, a follow-up phonecall is in order.
Oh yes, well documented disliker of important phone conversations I may be, but if a significant change for the better in my life is a possible outcome of them, I am surprisingly good at follow-ups!
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May 16, 2008 at 12:13 pm (PGP, SPD, hospital)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, dsp, national health service, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, pelvic surgery, pelvic pain relief, painkillers, new medication, analgesics, meds, SPD injection, PGP injection, SPD treatment, PGP treatment, DSP injection, DSP treatment
A while ago, I added my “e-signature” to a petition hoping to make the government aware of Pelvic Girdle Pain, hoping that they would allot some money to fund research into treatment. A few days ago I received the government’s reply - not very impressive. By the government, I actually mean the 10 Downing Street place… but as I am a Welsh lady, I may spend some time looking into the Welsh Assembly website to see if they have a similar e-petition option, perhaps they will have enough funds spare to do some good?
10 Downing Street’s reply to the petition.
In other, more personal, news - I had a letter from Atos Healthcare (aka, the Disability Living Allowance’s magical cronies who employ doctors to perform medical checks for them) giving me a map and date to attend a medical. I telephoned them, letting them know how impossible it would be for me to attend and asking for a home visit.
“Oh… um… you’ll need your GP to fax us a medical reason why this is difficult for you.”
“Ok,” I said, “could you give me the fax number, please?”
“Um…” -3 minutes later- “…yes, here it is.”
Yesterday I queued up at 8am in the pouring rain waiting for the surgery to open at half past. There were 12 people already there. 12! On a rainy Thursday morning half an hour before “open surgery” began! Oh Ely Bridge Surgery, how busy thou art. My GP of choice is currently on holiday, alas, but the Dr. that I saw was lovely and promised to send the fax off that very day. So now I wait again with baited breath to hear about my new appointment.
Today I had a phonecall from the hospital reminding me of my MRI and injections this time next week - wish me good luck, won’t you?
Happy happy happiness - my mum is coming to visit on the 27th-29th (27th is her birthday!) and that will be so lovely. It’s been quite a while since I’ve seen her and I know she misses us as much as we miss her. It’s upsetting that I can’t go running around showing her all the lovely sights of Cardiff that I’d like to share with her, but she doesn’t seem to mind.
I wish I didn’t hurt so much.
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May 12, 2008 at 7:07 pm (PGP, SPD)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, dsp, national health service, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, pelvic surgery, pelvic pain relief, painkillers, new medication, analgesics, meds, SPD injection, PGP injection, SPD treatment, PGP treatment, DSP injection, DSP treatment
How wonderful - there’s a new Pelvic Girdle Pain charity on the block! It’s specifically set up for sufferers living in Scotland but the fact that more people are clamouring against the tide of government/health policies and trying to bring Pelvic Girdle Pain into mainstream medicine can only be brilliant news for everyone affected by this debilitating state.
It’s not just your pelvis that gets weakened by this, but also your relationships with friends and family, your sense of independence, your identity as a woman, mother and person, and your grip on reality. Pelvic Girdle Pain should be a household name in that everyone should be made aware of the possibility of it and the full effect that it could play out in your world. When I was diagnosed with it - medical professionals were so surprised that someone so young, so fit looking, in otherwise good health, should get SPD in a first pregnancy and I was told pretty definitely that within 3 months of the birth it would be vanishing into as much of a memory as the birth would be.
Pelvic Instability Network Scotland (PINS) has inspired me to compile this list of SPD/PGP/DSP websites that I have found useful: if there are other informative and helpful places on the web to visit that you know of, please leave a comment as I will be adding to this list often.
~ * ~ * ~
Pelvic Partnership - The only other UK charity in this area that I am aware of. The website doesn’t give a lot of information as regards chronic (read: post-partum) pain. Well, no more information than common sense and a visit to a GP who has more than vaguely heard of the condition will give. The group of dedicated volunteers with personal experience of Pelvic Girdle Pain keep a helpline going, they also have “a number of e-mail contacts that will direct you to the person who can help” .
I’ve not yet used the helpline, but I did try to get help via email a while back and it’s pretty obvious that they prefer to give advice over the phone. Fair enough for some, I know, but I spend a lot of time talking talking TALKING about my condition with my GP, fiance, Mum…. the list goes on, it would’ve made a pleasant change to be able to write it down and get a written answer I could refer back to, perhaps print out and keep with me when I go to medical appointments etc.
UK Pelvic Pain/SPD/DSP is the single best resource that I have found for post-partum sufferers. This appears to be where those women in it for the long haul hang out, finger tips poised above keys, ready to pass on their struggles and knowledge of the medical world and procedures it offers. It’s a veritable hive of information. Though it is not the busiest place, I think it is the emailed conversations behind the scenes that give the most information and reassurance. I can’t recommend it highly enough.
The Delphi Forum set-up takes some getting used to, it is unlike most other forums I have seen and makes me wonder why that format was chosen (as opposed to the easier to navigate versions you can create). I can only assume that it is from the “old days” of the internet and asking members to update their url bookmarks to a clearer discussion board is too much trouble. If it ain’t broke, and all that.
Obviously two websites does not an exhaustive list make, but the evening grows late and the heat grows stifling so I should probably take this opportunity to either a) catch up on the soaps, b) give my love some attention or, as ever, c) sleep. Decisions, decisions…. !
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May 8, 2008 at 6:22 pm (PGP, SPD, rant)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, dsp, national health service, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, pelvic surgery, pelvic pain relief, painkillers, new medication, analgesics, meds, SPD injection, PGP injection, SPD treatment, PGP treatment, DSP injection, DSP treatment
I’m so insane. There’s no chance I’m going to be well enough to get a job in the near future. I don’t know what’s up with me. I just seem to need to be able to visualise a “normal” life for myself when I’m feeling one kind of low to make carrying on worthwhile. Looking/reading back with a slightly clearer head, I see the insanity.
I’ve been working on the Disability Living Allowance form today, went to see my GP this morning and she actually suggested I give it a try as she is fully supportive of my needs.
I’m becoming a recluse. I guess I should be spending my time trying to find a 2 bedroomed house or ground floor flat in Cardiff that accepts DSS so I can stop being imprisoned by the 40 odd stairs leading up to this flat.
More often than not, I just want to curl up and get into a pit and forget about all the pain. I only seem to wake up for my beautiful little boy and Michael. Is this what motherhood is?
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May 6, 2008 at 6:08 pm (PGP, SPD, hospital, rant)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, dsp, national health service, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, pelvic surgery, pelvic pain relief, painkillers, new medication, analgesics, meds, SPD injection, PGP injection, SPD treatment, PGP treatment, DSP injection, DSP treatment
My, oh my, it has been a while: my apologies for anyone who has noted my absence with regret.
Happily, I don’t seem to be any worse, though it’s true that I’ve not seen my GP for a while. I do plan on seeing her tomorrow, however, as I need a to clear some kinks out of my current prescription. The postnatal depression is still there, even with the antidepressants, as is the pelvic and hip pain. Oh yes, the pain is very much still present and a daily reminder of the “miracle of childbirth”.
MRI scan and injection both on May 23rd, should be a fun day at the hospital! The MRI letter cautioned me against mascara - I wonder if men are also lucky enough to have this addition?!
Henry now spends all day pulling himself up to stand against anything he can get a grip of, including his Mummy and Daddy’s unsuspecting legs. He also enjoys walking from place to place if his hands are held for support. We’re very proud of him - he’s just 8 months old!
Speaking of Daddy’s limbs, Michael has broken his scaphoid in his right hand and has been plastered. He fell down our stairs. We alerted the landlord months ago to the fact the light on our landing doesn’t work and it was quite dangerous. Maybe we should have been even more vocal about it?
As it was sunny last week, our little family surfaced and winced our way into Cardiff city centre - the sun had also brought out a gaggle of Michael’s friends and I hope I wasn’t as quiet and terrified as I usually am when faced with… well… anyone, really. Especially male anyones.
I’ve started hunting for a mostly sitting down job, something along the lines of call-centre/receptionist as I can type 60 words per minute and have a clear, cheerful voice. Perhaps it’s all a bit optimistic but I’m rather banking on this treatment on the 23rd changing my life for the better.
See - that all came off a lot more joyous than I actually feel! I guess that’s a good thing. That’s what I get for being informative.
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