Wednesday, 1 June 2011

my latest encounter with my feckless doctor......

I’m living with a rare condition with a doctor who knows sod all about my condition even though I’ve been feeding her information for several years. I’m starting to think she doesn’t want to know and that it may be time to change to a new gp. I’m still with the one that labelled me a hypochondriac up until 2008 when I demanded to see the HMS/EDS specialists, and she was ok, and doing a good job.........… up until my appointment the other day when she told me that i'm causing my Gastro-Intestinal system spasms on purpose & said i should just stop it & they'll go away!  when i corrected her & told her it's caused by my IBS & connective tissue disorder making my gut twitchy (had small bowel manometry so know this for sure…) she said to just avoid my triggers (which are eating & drinking anything & she knows this). At one point she asked me what she wanted her to do even though I’d clearly told her a few seconds ago…. So I repeated that I just need help to ease them a little and make them bearable and that I don’t know how to do it myself as I’m not a doctor and so I came to see you. She took offence at something I said and apparently I was aggressive (although I never raised my voice, used polite language and was curled up with a spasm so body language wasn’t aggressive…. So I have no idea what she was talking about). Methinks she’s slipping back into her old ‘there’s nothing wrong with you, stop wasting my time’ mode. At this point she ushered me out of the room without offering any help whatsoever. Gee thanks….

so apparently i can’t get any help for the crippling spasms while most other people can. how is that fair?

Evidently I’m not permitted to see my doctor with stuff that other people come to see her about (lets face it IBS and spasms are extremely common and lots of people will be coming to her about it and most will get help). So I’m addition to not being able to go to A&E for stuff that are major emergencies for ‘normal’ people (was made to beg for treatment last time and I had tachycardia and severe chest pains, then was left unsupervised for 9 hours (and unconscious for several hours of that) in the main waiting room) I’m not allowed to go to my gp for stuff that ‘normal’ people would struggle to deal with. Great. How on earth can we look after ourselves properly without an adequate medical team to help us? My condition affects my connective tissues, the main substance the body is made out of so every organ and system is affected to one degree or another. There’s no way I can possibly know enough medical information to fix stuff when it goes wrong without help, ….. but the very people that are supposed to help just don’t give a damn! It’s so frustrating and it makes me feel very lost.

Why do I just have to deal with stuff like trigeminal neuralgia, awful intestinal and stomach spasms (and spasms elsewhere), intense nausea, tachycardia, chest pains, inability to breathe properly, crippling headaches with visual disturbances (fluffy white lights around everything), tendonitis in many different sites, dermatitis, daily dislocations and pain without any help while if any ‘normal’ person went to the doctor about any of these they’d be more than happy to help them (and for many of them get rushed to A&E & fast-tracked in past the queue)….. it’s just not fair!

Being sick is rubbish. Sometimes I think I must have done something really bad in a past life for me to deserve to be punished like this. It totally sucks.

Fi xx

Thursday, 19 May 2011

Update on me & my life at the mo, and an apology!

Sorry I’ve not updated in ages, not been online as much as I’ve been struggling lately but felt much healthier yesterday, although much less so today. Today I feel like a pile of poo, all bloated, swollen, extremely dehydrated & dizzy but have been drinking normally so I’ve had that song in my head all day, the one that goes ‘there may be trouble ahead….’. I’m keeping my Imodium to hand, just in case and sorry if TMI! 

I’ve got good news- I’ve finally got a proper carer! yay! So (among other things) I finally I get to shower more & so feel sooo much cleaner & alive..... Now I get help I manage to put a little more energy into eating (and actually digesting) my food so I’m much healthier than I was 3 months ago!  I’ve also been put on vitamin and mineral capsules called ‘Forceval’. They’re massive but seem to be doing the trick so I can’t complain! Took a while to figure out how to swallow them without chocking myself and getting them stuck in the back of my throat requiring me to stick in my finger and dislodge it…. dropping my chin to my chest as I swallow seems to do the trick for now! But they’ve definitely made me feel healthier so i’m gonna keep taking them like a good girl. look- they're massive compared to my normal sized capsule of tramadol-

EDS certainly makes my  life interesting. One minute you’re getting ready to go shopping & the next you’re randomly laying on the floor with a dislocated left shoulder & left acromioclavicular joint. Great. Only had a window of 5 minutes so did the quickest relocation ever on both & again (& again as the sodding things kept popping right back out), said a few choice colourful words & finally attacked myself with zinc oxide tape…… & I made it on time to mums to go shopping! Woo! Go me! I’m getting good at this relocation & taping malarkey! Good thing too do it on a daily basis without the use of an A&E medic to help me. apparently dislocations are not actual emergenices for us bendies and so we shouldn’t go to A&E. I’m tired begging for treatment so I fix myself. like most bendy people do! & yes, i know i'm bitter about it. ;^P


Still waiting for my wheelchair. Darn it! I was told processing time was 4-8 weeks. its been 8 now so called the unit & they’re still waiting for it to sent back to them ready for me to pick it up. The specialist told me it takes the manufacturer only a fortnight to actually make the chair so I expect my chair paperwork has been climbing though NHS red tape & jumping through hoops for 6 weeks! Hoping it’ll be soon! Still, even with the delay it’s still quicker than most units- my first appointment was only in January!

Been having lots of fun lately with family, friends & crafts! Gradually getting better at knitting! Woo! Learned how to do stockinette stitch & making a little bag to practice it to reinforce the stitch in my brain so I don’t forget it if I don’t use it for a while. once I’ve finished I think I’ll go back to crochetting animals though as i like it better than knitting. Went shopping with future sister in law & found PERFECT bridesmaid dresses (I’m head bridesmaid! Woo!) & we had great fun in the evening looking at stupid videos on youtube (look up airbumming, its hilarious & apparently essential learning for anyone in the forces….). Shame about the totally crap shopmobility at Bluewater that had 2 available scooters but wouldn’t let me hire one for an hour as they were needed in 4 hours. boo, hiss etc. A week or 2 before that we (me and future sister in law) had fun making fruit salad & generally chilling out in my flat - my brother and their 3year old son came too so it was great. We ate more fruit than we put in the bowl and little Dylan couldn’t believe his luck that he got to eat so much watermelon!  Been singing lots too so that has been fantastic as i love it. Still get incredibly dizzy when I sing but as long as I sit down & don’t get up between songs I don’t actually faint so I’m a happy bunny! I’ve been singing at mass more & have sung at special events lately- a wedding & a mass for the kids making their 1st holy communion. Now only have to be able to be well enough to actually make it to practice on a Tuesday night & I’ll be laughing!
My poor, long suffering gym ball got attacked by fruit. Future facebook profile pic methinks!

It's like she's superglued to me today!
Ooh just noticed that my cat, Tiger has been acting rather odd all day - she’s been hovering at my side all day, apart from the short time I was in the shower with the carer. She even sat on my chest this morning so I couldn’t get up (I wasn’t arguing, felt so nauseous and dizzy that I had no intention of moving!). She’s still sat here about an inch from my leg & is making me think I need to check my heartrate & b.p. She only ever does this when I’m sick ....... She usually comes and says hi, eats her dinner, pops out & then goes straight back to bed where she stays. But been my shadow all day! Kinda worried. Hopefully she’s just in a cuddly mood!........ Or maybe not- Heart has started palpitating like it’s on a mission to escape from my body and I don’t have the energy to fight it so methinks it’s bedtime! 

poor tiger puts up with a lot, i'm surprised she still likes me:

Sorry for the length- must update more often! the next one will be much shorter, i promise!

 Night all!

Thursday, 31 March 2011

Chronic fatigue totally sucks!

Spent all day feeling like I’m wading through treacle, I’m totally exhausted.  Keep doing stupid things like pouring the milk for my coffee into the kettle, almost eating the cat’s dinner as it was in a bowl on the counter beside my soup, flushed the toilet before I used it, couldn’t figure out how to open a letter, opened the door to let the cat in when she’d been sat beside me, keep leaving the fridge open, put my febreeze into the freezer (have no idea why…. Good job it wasn’t a full bottle or it’d have exploded!!), keep making drinks and forgetting to drink them, and just making a new one totally forgetting all the old mugs of cold tea everywhere, taking all my medication in preparation to eat and then forget, so I have to wait 4 hours before I can try again, oh and I’ve been wearing my jumper inside out all day and never noticed (a visitor pointed it out to me)…. The list goes on and on.

Feels like it’s too hard to breathe deep enough so I’m dead dizzy, and the orthostatic intolerance & tachycardia is really bad so I’ve been trying to avoid standing up so I’ve spent the day crawling round the flat. No amount of naps seem to be working so I think I just need to sleep for a few days…. But I doubt my sleep disorder will play nicely and actually let me sleep. It stops me getting into REM sleep properly so I end up waking up every 3 or 4 minutes all night. And as I don’t get into REM I rarely get into deep sleep, and the few moments I get into REM ok I end up sleepwalking, sleep talking, have night terrors etc. fun fun fun!

Gah! Hate being this tired. Would love to be able to have as much energy as ‘normal’ people have and not need to nap every 2 hours or so to survive the day! And i get really annoyed when they whinge about being ‘exhausted’ when they’re still able to go out and dance, have fun, do sports etc without any problems at all and brag about how late they stayed up partying and how they were able to get up for work the very next day and manage to do their job ok. It’s not fair! If I tried to do even a little of that kind of stuff when I’m exhausted I end up with my tachycardia getting up into stupid bpm rates, blood pressure dropping into my boots (and so extremely dizzy), my feet turning blue and numb, a gut that refuses to do peristalsis and I eventually black out for several hours. Not forgetting the slurring of my words, the appalling brain fog, the vision disturbances, the migraine and the staggering around like I’m drunk etc before the black-out happens. I think when I get knocked out unconscious I’m actually just asleep, and that my body hit the point of exhaustion when my batteries totally run out and so my body gets ‘turned off’ to stop me dying. but so deeply asleep that no one can wake me no matter how hard they try.

Oh, and when people ask how you are and I say I’m tired and they say ‘oh I know how you feel, I’m completely exhausted!’ but are still able to bounce around and function without any problems, and go shopping to a large high street and walk around for hours and hours without needing a break. Yeah right…. Methinks they mean they’re tired, not actually exhausted. Methinks it’s the same as people saying that they’re ‘starving’ when they’re just hungry.  I just hope they never end up with CFS or a similar condition that makes them able to feel what real exhaustion is actually like, I wouldn’t wish it on anyone as it totally sucks.

Surely I have enough conditions to not need chronic fatigue too.?! It’s not fair, why cant I have just a few normal energy days so I can actually get stuff done! Needing to sleep every 2hours is really rather irritating.

Ok, rant over….and I admit that it’s a little unfair to compare my fatigue to anyone elses as it’s all relative etc, I just wish they’d remember that I have CFS so please don’t say that I can’t possibly be as exhausted as them... cos I’m usually more tired but don’t moan about it as it’s pointless as I have it every day…(sorry for moaning!)

On a more positive note, my doctor’s appointment yesterday went great and I’m finally being tested for gluten intolerance. Woo! And so hoping my new chair will allow me to save a few spoons so I’m not running at a deficit every day. Anyone curious about the spoon reference check out this link:Spoon Theory from

Going to bed now and gonna get loads of sleep… hopefully…..

Tuesday, 29 March 2011

I’m about to become a new wheelie! woo!

I’m about to become a new wheelie! yipeeee! should get my chair in about 6-8 weeks and struck gold as my borough don’t do the voucher scheme and so are paying for my chair to me made custom built just for me! And nothing for me to pay! Not a penny! I can’t believe my luck and not entirely sure how I qualified and got through their rigorous qualification criteria (they're super strict cos they don’t do the voucher scheme) as I can still technically walk with crutches.... (Although not very well, and only for very short periods of time, and every step is really painful) but I’m not complaining one bit! :^D I was fully expecting to have to fight for my chair, I got so worked up and stressed over it and it was all for nothing as the assessment went fantastically! The question of qualification never came up at all so obviously the first assessment and all the backup info from my physios, doctors etc was sufficient. Yay!  I hoped I’d sleep well on the night of the assessment but I was waaaay too excited about my chair to sleep (and still am…. I’m like a kid waiting for Father Christmas to arrive!).

I’m getting a customised rigid Ti Lite although not sure which model, don’t care though as all their rigid chairs look fantastic and are around the same weights. All have these flashy, fancy pants spinergy wheels that are sooo easy to push! Tried a few chairs and was shocked how easy it was to push the TiLite compared to the others, and they were all of similar weights… had a proper try of the chairs and got to try them on the lino floor of the assessment room, on the carpeted hallway and outside over the pavements, cobbles, down dropped kerbs etc and put my choice of chair into and out of my car to make sure I could manage it. Fab assessment! Proper fun!  And I got a free cup of coffee in the assessment! Woohoo!

But, best of all- when I was sat in the TiLite chair I almost had no pain from my SI and pelvis! That’s dead unusual for me, I usually always hurt there in varying intensities and on the day of the assessment my SPD was awful so it took me a while to figure out what was different when I sat in the chair. Think the assessors though I was a bit odd as I sat there all confused for a while, then got really, really excited when I figured out what the difference was! Soooooo can’t wait to get my chair and be able to go places that I currently can’t get to (like the zoo, aquarium, museums, shops without needing to queue sat on the floor, national parks, ‘walks’ with friends…. I’ll be able to go feed the ducks again without needing to sit practically in the Thames…. Oh I’m so excited!!!!!!!). I soooooo can’t wait to get my chair and reclaim some of my lost freedom!!!! wooooohooo!

It’s amazing how quickly news like this can change my mood- I’ve gone from being really rather depressed to being ecstatically happy! Not had a night as bad as that since so I’m thinking it was a once off. Maybe my brain was just reminding me that the depression is still lingering at the back of my mind so I need to keep my coping skills fresh and practiced! ;^D

Thursday, 24 March 2011

Last night my old ‘friends’ came to visit- depression, self-harm & suicidal tenancies. Great. Thought they’d gone for good.....

Seems all it takes is for my fibro pain to get above my pain tolerance level then they all come back with a vengeance.  Went through a really bad patch from ages 13 to 20 ish when i was always depressed and self harmed daily and often decided to end it all but never could as I couldn’t do that to my brother as I know he’d have been really upset.

In my second year ish of uni I just forgot to self harm and my mood greatly improved. I don’t think it’s a coincidence that I was then in halls of residence and so able to nap between lectures so I wasn’t quite so exhausted all the time. my fibro pains get much, much worse when I’m exhausted so they reduced loads and I was able to live a more ‘normal’ life. Since uni I’ve had the odd setback of the depression and self harm but nothing like last night! It was so strong that I had to lay on my hands to stop me hurting myself, and the longer I resisted the stronger the need became to end it all. I just couldn’t bear to live if I was gonna hurt this much all the time, it was in absolute agony last night but I didn’t dare try and take some extra pain meds in case I took a few too many…. I think I must have cried for 3 or 4 hours before I finally fell asleep at around 5am. I soooo don’t want another night like that! I felt scared that I would try and do something stupid, but at the same time that was the only thing I wanted to do.

Really needed to talk to someone at around 3am but all my friends would have been sleeping, and the online message boards were dead- there was next to no new posts and so I assumed my friends in other countries were busy. Now that I’m awake and feeling much better, I know that I have many friends that may have been annoyed that I’d called them but would have comforted me and forgiven me for waking them up. But last night my brain was telling me that they would be furious and decide to cut ties with me (like certain other friends did when they discovered I had an incurable condition, just when I needed them). I need my friends, and can’t bear to think of a life without all of them so I didn’t call anyone and just cried instead.

What do you do if you really need a hug but it’s the middle of the night and most of your friends live in different parts of the country? Even the cat was asleep so I couldn’t cuddle her, and she’s supposed to be nocturnal. Settled for hugging myself, curled up into a ball, and thankfully I fell asleep.

Now it’s daytime and I’m awake I still feel low and a bit tearful but don’t have any need to hurt myself (or worse), I love being alive and I’m now terrified that I may have ended it all last night. I’m just glad the logical part of my brain was still functioning last night and it stopped me. This morning I had a call from my dietician who was really worried about my vit D deficiency as I’m severely deficient, deficient enough to be experiencing adverse affects which apparently include depression. It such a coincidence that she mentioned that the very morning after my awful night…. A normal level of vitamin D is above 50 nmol/L. Levels less than 25 nmol/L mean that you are deficient. My vit D level is only 7 nmol/L. it’s likely that I’m not absorbing it thorough my gut properly (due my various gastrointestinal problems) as I’m still very deficient even though I’m taking the medical dose of d3 forte tablets. My dietician wants me to take a much bigger dose and she’s contacting my GP about it.
Let’s hope my recent depression and lowness is due to my vid D deficiency and when that’s corrected it’ll be back to what I was like a few years ago- nice and cheerful without having to fake it when in public!  Have no suicidal tendencies today so fingers crossed that if I take extra pain meds in the evening I’ll keep the fibro-from-hell at bay and not have another night like last night, cos it was hellish. I really quite worried that it’ll happen again and quite scared of the prospect. But I’m a big girl and so I’m sure I’ll cope again.

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

Monday, 28 February 2011

New Toys!!! woooo hoooo! :^D

Thanks to my lovely O.T. i've just had some new toys installed into my flat, but not toys that most 'normal' people would get insanely excited about (like me.....)- as they're mobility aids! 

my favourite of all is this one:
a bannister along my hallway so i can walk along the hall without both crutches and still not hit the floor! wow, rather novel concept! ;^D it still needs to be either varnished or painted as it's just unsealed wood but has already made a huge difference and it's not been in my flat for longer than a few days! i'm very tempted to paint it white and then stick smiley face stickers all over it, with a coat of clear varnish over that. i love stickers, the brighter the better! i've currently only got them plastered on my crutches and braces and none on my new toys.... methinks a sticker buying spree on ebay is gonna be required soon!! 
also got a perching stool that has been used looooads today (it arrived this morning). i cant believe how much easier it is to make a cup of tea when you dont need to struggle to remain standing up. it's a genuis invention! 
and got these 2 for my bathroom (and the railing on the tiles):
the bath is an odd size (a 3/4 size bath and not a full size one) and so was between sizes for the bath boards so we opted for the sightly narrower one as the wider one would have stuck out and when sat on the whole thing would have tipped. it's fixed underneath so it's safe as i'm only little, would probably be a different story if i was larger. and my midget step! a huuge step for me to be able to sit on the board as my legs were miles too short! lol!

i was suppose to also get railings around the toilet but the fitter was reluctant to drill into the floor as we couldn't see where the soil pipe was running, but he wasn't very nice and tried to coerce me into accepting it as done with the rainings just sat there. had to explain several times that it would tip if i leant on just one side but he just couldnt figure that one out. i tried explaining it several times but it just wasnt going in so i made him sit on the toilet and stand up pressing weight through only the right side (my left hand and shoulder are pretty useless) and then the penny dropped and he understood. i'm glad he finally got it- i was about to bang my head on the wall in frustration. so it went back to the warehouse with a note written on the delivery note thingy. 

my bed raiser rail thingy also had to go back as the wrong one had been ordered. he wasnt too impressed by that either!

and got a rail so i can attach my therabands and do my leg physio. the fitter was adamant that he knew best and the rail could not be there. but i stuck to my guns and he relented. unfortunately he wouldnt install it in the way it would have been the most useful (vertical) as a little horizontal line had been put on the diagram he got. so i now have a place to attach the band to do my knee exercises but not my feet. warned him that if my physio's didnt think it was adequate that he'd be getting a call to fill the holes and re-install.

feel a bit sorry for the poor guy, he obviously thought i'd be a pushover as i'm physically disabled (and so probably thought mentally disabled too as a surprising amount of the population think they always come together....) and look really young. oh how wrong could he be!  lets just say he learned his lesson........

my day was going great until i got my presciption prepayment in through my letterbox. i always forget when it's due so it comes as a shock and not cheap at £104 but FAR preferable to buying every item at £7.20 so i forked out the cash out of my savings. better to pay £104 year rather than over £1500!

was feeling a tad low after paying that as funds are running rather low as it was without forking out more money but my cat, Tiger, amused me tons by getting exceedingly excited by the salmon that i'd taken out of the freezer while re-organising my freezers contents. i wasnt intending on eating it but she went totally nuts! climbing all over me and drooling! so i gave in and roasted it for dinner and gave her a little, and i've never seen food vanish that fast in all my life- i blinked and it had gone! i turned my back for a second and found her removing all the last traces of fish off my plate. methinks i'll be sterilising that plate..... lol! but tum protested less than i expected so flare up is already easing. woohoo! now just for the pain everywhere else to go away.....

fi xx

Sunday, 27 February 2011

London transport passengers at their finest. only one word to say to them - karma........

What the heck is wrong with people these days???! they seem to have lost all the manners that their parents taught them......

had to go into central London for a CT scan of my hips on Friday afternoon at uclh hospital. journey there all ok. scan more than ok- was there early so was seen early and as the machine is the new sort the scan took 5 mins rather than 15. all good so far.

until the journey home..... :wall:

made my connection to from warren street to Leicester sq ok but from there it all went a bit wrong. i got on the train ok, positioned myself by the 'priority seating' and ask loudly and politely if anyone could please give up their seat for me (as i really cant stand on a moving vehicle without falling). & generally there's always one person somewhere in the carriage who leaps up and offers their seat to me (and usually not the ones in the priority seating). at the very least there's usually someone who helps me sit on the floor safely. but not on Friday. everyone in the entire carriage did the 'i can see or hear you' act and the train moved off and i fell, nice and hard. :shock: i fell heavily against the clear plastic barrier thingy next to the seats before i hit the floor and made a lot of noise so the guy sat in the seat next to it DEFINITELY heard it (and must have felt it too) but he still ignored me. i tried in vain to make eye contact, but they were doing their best to look everywhere but at me. so i stayed sat on the floor for the 11 or 12 stops till south ealing when lots of people got off and seats became available, so i got up with some effort and went to take the priority seat..... and was beaten to it. :wall: people were literally running and side-step leaping in front of me to beat me to it, one man was millimeters from knocking me down. the speed and agility they all showed left me with little doubt that they were far more able bodied than me.


repeated my polite request and got the same response. so i fell again again. both times i fell on my dodgy hip that was still darned sore after my orthopaedic assessment last week so i cant describe the pain, it was so far above my pain tolerance that i was close to tears (but will never cry in public after the last time i cried on public transport and was spat on). due to the damage to my hip and left leg, when i got to my station (approx 17 stops from Leicester Square) i had to crawl off the train throwing my crutches in front of me (again, NO-ONE checked i was ok) and had to sit on the platform for about an hour till i was able to walk (and then could only walk as i took loads of painkillers). then it took me almost another hour to get up the stairs, out of the station and walk the short walk to the bus (usually takes me only 5 mins). :evil:

so a 45 min journey took me almost 5 hours and i was in tears by the time i got home from the pain and frustration. and relief - I've never been so relieved to be home in all my life! I'm visibly disabled- got crutches, lots of braces etc so it was obvious i may have needed a seat even without asking, so i guess the lies the press are spreading about us disabled (that we're ALL benefit scrounging scum even if we're not on any, we're the cause of the credit crisis as we're all workshy, etc, etc.....) are being believed. fantastic. well done to the press and the government. we should give them a round of applause.......

AAGGGGGGHHHHHHHRRRRRRR! so hurt like heck today (feel like I've been in a boxing match and
:evil:  lost) IBS and gastroparesis are all flared up now, keep vomiting and feel like the living dead. fantastic. i'm soooo glad for my pals at church today who made me feel so much better, was tempted not to go as i really dont feel too well but as usual it was worth it! and i've even got a pal from church wanting to come with me to my next appointment in central london to act as my bodyguard! yay! she's a formidable woman when she wants to be so i'll feel a lot safer having her there.

Lets hope my week improves before i loose the small shreds of sanity i have left! got some stuff from the O.T. arriving tomorrow so *should* be a good day. But then, i'm also gonna be starting on a course of nasty antibobos..... ah well!

two small pictures i couldnt resist taking as i looked so ridiculous. NHS chic at it's finest, although the quality of the fabric was better at this hospital compared to my local one. and it had both ties so my bum wasnt on view. always a bonus! and why are they always 'one size fits all'?? it went round me loads of times and if it was any longer i'd have fallen over the end! lol!

fi xx

Monday, 21 February 2011

Oh insomnia, how i love thee.....

I’m frustratingly wide awake at silly o’clock in the morning (3.55am). I’m far too awake, I’m never this awake during the day…. Maybe I’m over-tired?

My pain level certainly isn’t helping me get to sleep- I had my orthopaedic appointment on Friday lunchtime at UCLH in central london & the consultant was brutal during the examination, particularly when he did the hip impingement tests. So I now feel like I’ve been run over by a speeding double decker bus, I hurt soooooo much, far more than I expected to. The journey to this hospital used to take me 45 mins but took me 3 hours now that i'm so broken, so I’m soooooo not looking forwards to travelling for my CT scan on Friday at UCLH. It’s at 4pm so it'll be rush hour on my journey home- I’m fragile and get injured & dislocated from only a small nudge, so crowds of people are my idea of hell. Methinks I’ll be camping out in the UCLH cafĂ© for a few hours with my book….. At least they have decent coffee (Costa coffee outlet) so waiting for the tube chaos to ease won’t exactly be a hardship! Lol! ;^D

And I’m so unbelievably excited that I’m finally getting my assessment with the lightweight wheelchair man at the end of March! Wooo hooo! So I’ll soon have my freedom back! Yippeeeeee!

Apparently it’s time to try and sleep again…..The cat is sat halfway down the hall and whinging at me. It’s obvious she wants her human hot water bottle in the bed with her & I expect she’s also doing her impatient foot stompy thing too- she’s so cute when she’s mad at me! ;^D it’s amazing that a creature who can’t speak English can still clearly get her point across! Lol!

Night! (or more accurately- morning!)