I'm back! 😊🙋

The last few years have been really hard, I've been really rather sick and I wasn't well enough (mentally or physically) to keep up with my blog. My gastroparesis has been gradually getting worse from mid 2011 and I ended up getting a feeding tube surgically implanted around a month ago. I'm feeling a lot better, I have more energy and generally feel healthier and more alert etc so I'm restarting my blog.

In my next post I'll briefly go over what I've been up to lately, I'm currently doing my DLA renewal so haven't got much time to sit doing fun stuff like updating a blog! So this one is a brief post, my next will be much more interesting! 😊

Hiya, I've decided that it's time to restart posting on my blog. Had to stop mid 2011 due to worsening mental health and I was worried that I'd post something that would trigger someone, so I stopped posting.

The last year or so has been hard one for me both mentally and physically. Really struggled with the seemingly endless reassessments for employment and support allowance and as each of my renewals ended up at beween 90 and 100 pages  of text and information, medical reports etc each, writing so many of them in a year really took it out of my body physically. Add to that my DLA renewal that was due around March and that was about 180 pages before the medical reports were added......

 Luckily I found out in September that my DLA renew went through ok and I found out at around the same time that I had been moved from the work group to the support group of esa. I was moved about 2 months after my last renewal went through and then I was still in the work group. I received a few hundred quid backdated money so that, added to the random timing makes me think there was an audit and I'd been in the wrong group since day one.....

But being told that I won't have to renew my esa till 2015 and my  dla will run till my application of that new PIP benefit scheduled also for the end of 2015, has made me mentally calm down a lot. Id continually been on edge waiting for my next esa50 form to drop through the door as I was getting them every 4-6months since 2009..... And writing a book 3 times a year is a very hard and quite frankly a terrifying prospect, especially as you have only a month to do it and you couldn't really write answers in advance as the questions subtly change, presumably to catch out those who prepare in advance.

Being constantly on edge and feeling like i was constantly being examined made my mental health nose dive so much that i lost my battle with the self harming and had thoughts of just ending it all as i was really struggling but luckily my move to the support group came at the last minute and stopped all that. Still have relatively mild desires to self harm but ive got it under much better control now, bar the odd episode or 2 when I'm triggered.

So im able to post and deal with life again without finding it so much of a struggle. I've also got most of my confidence back so im able to defend myself when bullied and used like a doormat by people, although the only way ive been taken seriously in some situations is to swear and curse with a very assertive tone. Being a small girl in a wheelchair and looking very young for my age (and also looking surprisingly innocent and naive.... Which im really not! :-D ) doesn't make it easy to be taken seriously by some men...... Particularly those older men who lived most of their life in a world where women were second to men and all visibly disabled people were institutionalised and basically imprisoned away from the public eye.

But that's not the world we live in now and i refuse to take any crap from those bullies and users anymore!!!!!

The feisty, independent, confident and stubbornly determined and defiant Fi is well on her way to being back! And once im back and firing on all cylinders im gonna do my damnedest to not let myself slip away so easily! :-D

Best stop now, its after 2am and ive got my little 3 hours a week job tomorrow so i need to try and sleep...... Which is gonna be hard cuz ive just remembered ive forgotten to take my meds. Crap! Was wondering why i was hurting so much! Ah well....... Lol!

As its been so long since i last posted I'll post a brief piece on my medical history and info about my main conditions in my next few posts :-) .

Off to bed i go! :-D

Night all,
Fi

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

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 1^st 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!





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 butyoudontlooksick.com

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

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

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.