Sunday, 20 March 2011

Census etc.... :^D

Sorry for delay in updating- was in wales with my lovely pals that have just had a new baby! She’s soooo cute, and I did off roading with a mobility scooter (sooo fun!) but will write about this later as I need to download my photos from my phone.

Census……decided to fill it in online due to how far away my post box is….bad plan- been stuck on question 1 for nearly 20 mins as the site is unbelievably slow. Surely if you know there will be a high number of people using the site you’d actually develop one that can handle it!  Oh, and it’s just timed out and logged me out! The code is 20 digits long so not a quick and easy code to enter if you transpose numbers…. Stupid bloomin census…..  I’ve got shed loads of massive  forms to fill out at the moment and I soooo don’t need another. Especially one that’s 30 pages long! I feel lucky that I live alone so don’t have to fill out some of the questions! finally did it though... go me!! hope everyone else manages theirs ok! xx

Had some really good news on Friday- my hip operation can be postponed! Woohoo!  my CT scan showed that I have marked shallowness of both hip sockets so I definitely have hip dysplasia (& we already know I have some damaged cartilage in my left hip), but the bones are all looking nice & healthy with no signs of deterioration. so I agreed to wait till my hips start to struggle as the op would damage soft tissues that may not heal thanks to my EDS so I may end up with more pain than I do now. so I’m just gonna carry on as usual as I can tolerate the pain perfectly fine- most of my other pain (eg the sciatica and bicipial tendonitis) is far worse so this is nothing in comparison! I was mainly worried that the pain was coming from damage to the bony structures of my hip thanks to the 29+years walking on dysplastic hips (that slide around in the sockets) and my assault in late 2009, so I feel soooooo reassured!  Was mildly annoyed at having to wait 3 hours for the appointment but there’s no point getting upset and angry about it as it’s just what happens in hospitals- every appointment over-runs a little and by the end of the afternoon the additional time adds up.  Many people were giving the receptionists and consultants grief about it but there was really nothing that they could have done about it. at least those around me saw the funny side to the situation (as did i) and we all got really excited when the consultant’s doors opened! I’m sure the consultants were relieved that they got some happy patients for once!

And my ‘bodyguard’ worked her magic on the journey there- we got to the hospital in only 1 hour! Usually takes between 2 &3 hours but as we got to our connecting stations the train arrived so we had no waiting! And I had absolutely no problems getting a seat, & it was obvious that people could see me etc so I’m much less scared about the tube now. Hopefully that really bad journey was just an unlucky carriage… fingers crossed! Got another big appointment on Tuesday with the autonomic nervous system team at The National Hospital for Neurology & and Neurosurgery located at Queens square (WC1N), let’s hope  my journey is as easy!

Had a great assessment with the independent living team about either getting a carer from social services or the personal budget so I can hire a PA. I’d probably go for the latter as it’s much more flexible so If I need to re-arrange my care for a different day (eg if I’m in London for an appointment) I can do. And they don’t do meal prep and I really need this so I can hire someone to do it for me, in addition to other tasks. Got a mighty huge form to fill out and have to get the go ahead from my co-oordinator lady but it’s all looking really hopeful!

Another potential positive change may be happening – had a tip off that there’s charity shops in whitton always looking for more volunteers! Looked at volunteering in loads of different charity shops in west London but every one I went it was fully staffed and not looking for any new people and voluntary office work wants you to work set hours (all more than I can do) so I got really disheartened. So I’m really excited that I may have a part time voluntary job by the end of next week! Wish me luck!

So I’ve had a busy few days and I’m properly knackered now, which has set off my random heart-rate & blood pressure thing so I keep blacking out when I stand, and my chronic fatigue, fibro, sciatica and dermatitis are all flared up but I’m sure I’ll feel much better after a few days of rest


  1. I'm glad everything seems to be going well! :)

  2. hey glad your okish. good luck with the queens square appt. im sure there are a couple of outside parks you can sit in outside if you need some air. used to use russell square alot.

    best wishes, emmax