All too much

[liz2mac]

Hi all, I'm having an "All TOO much" day today. I want to stop this particular bus and get off. Don't care about being a pincushion, don't care about chest infections, sinus infections, meningitis etc. Do care that I feel my life and work has been com pletly wasted.

[slf]

Have my sympathy there. i was'nt diagnosed till my late 50's and the penny is only just dropping,why i felt to tired to finish jobs,or even start some,too sick too often, to be considered for jobs,and now it's too late to put it right.
Still got to laugh,I managed to do so much despite all that,had so many great times,just poorer financially for it all'
Steve

[john]

talking of an "all too much" time, in the last two weeks i've had a hepatology con, resulting in an ultrasound scan and an endoscopy, a dental appointment for check-up and clean-up, an oncology con appointment (tomorrow, and goodness only knows what tests he'll want!), and oh yes, IVIG when they needed three stabs to get started!!! let's find a bus that is going where we want it to go - that's if we have the time to spare for the ride!
take care - john (fast becoming a grumpy old man)

[liz2mac]

Oh good lord John, how on earth are you keping your sanity? I do so hope your appt today was ok, let me know? As to stabbing you three times before getting in........sack the b*******! Mind you, I have to admit here that there have been occasions (rare I'll grant you) when I've taken three goes to get into a vein. Grr. I've not really been well since I had the meningitis last April. Ended up in my local hospital in November with chest infection needing IV amoxyll & have felt like poo since. I'm waiting to have out a troublesome parathyroid gland. Crossing everything that can be crossed that my life will really improve after that. The bus ride I'd like to go on would involve an open upper deck, beautiful weather and a seascape. Fancy it? Best of everything. Liz.

[liz2mac]

Hi Steve, sorry, only just getting my head around how this site works. I don't know how you carried on living without a diagnosis all that time. Do you have much damage to your chest & lungs? I do and have a constant battle with keeping infections at bay. I nebulise colomycin twice a day in both my chest & sinuses. Then their's the tedious lung clearance. Still, I use the time when I'm imbibing drugs to use my computer, so that lessens the tedium. As you say, it surely leaves us poorer. The thing that gets my goat most of all at the moment is the fact that our disabilities are hidden. The filthy looks I get from people as I park my car in a disabled slot have to be seen to be believed. Thing is, when I'm well I really try to walk a long way with my dogs, but when I've got an active infection and am on mega antibiotics its as much as I can do to stumble into the supermarket & hang on to a trolley for mdear life as I creep around a section of the store. Oh I'm a REAL moaning minnie todau ain't I?!!

[mali42]

I think we all feel down at this time of year with xmas a distant memory and in my opinion the worst 2months of winter to come,
So I am looking forward to about 7 weeks time when it starts to get lighter and the first signs of spring are in the air.
So I,m getting off the bus ( too many people coughing on busses anyway ) and getting a taxi :-)

[john]

haha,
now this here bus trip would be fun if...
there are no doctors or nurses on board,
spring has sprung,
the bus is one of those topless jobs and i'm up top up front,
we're humming along the south devon coast,
the sea and the sky are deep blue.........
oh well, it's a thought!
all aboard - john

[slf]

Thank you John,deserves applause,our very own poet moderator. Liz I have to tell you that life has been punctuated with illness,but in between I have had so much life,while always suspecting there was something wrong,according to GPs that would be hyperchondria,but i have been pretty fit really.
I like this section best a bit more social !!
Steve

[liz2mac]

Lol all of you! Thank you so much for cheering me up! I'm on the bus & the taxi. Now here's a thought. It's ages since I've been to the theatre, too much like walking into germ soup and being trapped in it for three or more hours. Do you think the taxi could take us to the Minnackl outoor theatre..........................

[john]

haha,
steve, no-one ever called me a poet before!
but who knows, if you say so i maybe have a hidden talent, if and when i got the time to indulge it!
john

[mali42]

I had visions of John singing away as he typed lol, See what happens when spring is mentioned :-)

[john]

liz, don't miss out on the theatre, just sit in the royal box in glorious isolation!
malcolm, you have obviously never heard me singing, or you wouldn't even imagine that!!!
on a brighter note, my onco con this morning was good - he thinks i am well despite my blood readings and that i can go away and just enjoy (!!) myself for the next six months, so i guess it's time to plan some holidays!!
and spring IS my best time of the year. i'm always happiest when the new buds and spring flowers are out - a cockeyed optimist- moi- DEFINITELY!
take care - john

[susand]

Hi All,

For the last three years I have faced major health problems - cancer, liver disease, bone marrow problems - on top of the PIDs.
I am an optimist by nature, trying to find the good in all situations however small it may be and in general "I soldiered on".

I did moan, but not fully, not daring to stir up or uncover the despair and losses that were bubbling. For some months I denied the need for, and so avoided, support, and largely made light of my situation to family and friends, in order to avoid them worrying too much!

I have learnt it is not negative to moan or to express fears and doubts. In fact it is positively healthy to do so! The optimism is strengthened by it. This is my experience, at least.
I've also learnt that all things pass, and I've hung on by my fingernails to this thought through many a dark day.

I have begun 2012 with this idea:

"The question is not how to cure or be cured, but how to live"

So I am busy including new and fun things in this year's goals!
As well kindness to myself each day, taking it as it comes and adapting as best I can.

I wish us all some brighter and better days as we trudge through January!

Take gentle care

Sue

[liz2mac]

The Royal box it is!! So glad all went well today John. See you in clinic tomorrow? Sue what lovely things to say, thank you so much. I love the quotes and will keep them for my down times. Steve its so good to know that you too were loaded into the hypochondria cart. I often used to think my gravestone would have the classic epitaph "I told you I was ill". I can laugh at it now but I didn't at the time. I'm so glad that you had good times in amongst the bad. Sue you really have been/are going through the mill, hugs. Let us know both good & bad things? You've touched on a very deep thing about how we cover up for people to protect them. I've done it for years and still do it. I was lucky, Alan Scott & I supported each other through good times & bad. When he died I was so at sea I didn't know how or why I was to carry on. Three years later here I am finding you guys. Thank you again Sam & John.
Liz.

[john]

here's a bummer!!
sue and i are off to devon for a few days of peace and rest ( with my mum!!), and yesterday i started an infection!!
i know exactly where it came from, a doctor's waiting room, and even though i told them i needed my own space to wait the message didn't get through!
there will be a lot of angry fellow guests at the hotel thanks to me coughing all night!!
hang on - i have some night nurse here, that should help!!
take care - john

[mali42]

Thats bad timing, same as me but I didn't even make cornwall as the timing of the infection was spot on, Hope you still have a good time and get well soon,
Malcolm

[s162216]

My last infection (and probably the first serious one since my diagnosis) sort of ruined my plans for coming home from university for Christmas, I've got a cheap 1st class train ticket booked for Saturday afternoon, every-thing's going fine...
Suddenly on Thursday I wake up and my throat feels a bit painful, I'm really hoping its not another upper respiratory tract infection as I've been getting them one after another and say to myself that I'll go to my GP if it gets any worst... Fast forward to late afternoon/early evening, I go for a walk to the bank and come back feeling really sick and my blood sugars dropped unexpectedly. I eat some soup and crackers as my throats hurting so much that I can't eat anything else. It then gets worst and I decide to go to the walk in centre, I slowly walk there (about 1 mile) and.... its shut! Open 8 - 20 but last person admitted at 19:30, its 19:36. Damn why don't they say that on their website!
Trudge slowly back and then about 300m from my flat I throw up everywhere and after just standing there feeling terrible for 5 minutes someone asks if I'm o.k and helps me along a bit. Once I get into my flat I call the out of hours doctor and they send a car around for me eventually. Now rather than being unable to raise my blood sugar its skyrocketing despite me doubling my insulin pump rate and I'm feeling very cold even though I am wearing 3 fleeces. When I finally get to see the doctor at about 00:15 he tests my ketone level in urine and finds its +3 which is life threatening so he calls and ambulance for me. Not a very long trip though, its only pretty much around the corner from the QMC!

To cut a long story short, the infection had basically messed up everything and sent me into diabetic DKA (luckily I found this out before it got bad - pass out with DKA and you spend the night in ICU costing the taxpayer about £2000!) and they suspected I might have a liver infection as well because my LFT's were all over the place. IV paracetamol is wonderful stuff, it brought my temperature down only for it to bounce up to 39.5 again! Ended up having to have co-amoxyclav and they discharged me 3 days later. I never want to have another blood culture taken though, they take so much blood and they took 6 of them before I was discharged.

I sort of missed my train and nice comfortable way home! Biggest pain though was the boredom, my phone was flat so I couldn't ring my flatmates to bring anything and I didn't know their number, so I had literally nothing apart from 2 insulin pump cannulas that I had brought with me on the off chance that there was something seriously wrong. My parents were finally able to come up to Nottingham and bring me some stuff on Saturday.

Annoying how things like that only come up when you don't want them to!

Sam

[liz2mac]

John, so sorry your w/e been messed up WHY won't people ******* listen when we tell them things? I had meningitis in April, endec up on the critical care ward........along with lots of people with heart problems (fine) strokes (fine also) and acute chest infections NOT FINE. I have rarely been so frightened in my life. Despite the fact that my daughter was down as my N.O.K. they wouldn't talk to her because of patient confidentiality despite the fact that she was ringing scared s******* after I'd been txting her. I couldn't do anything as I was on so much oromorph for the pain that I was unable to sustain a conversation about my own safety with idiots who didn't want to hear. I finally discharged myself when they put a woman IN THE NEXT BED TO ME who was paraplegic and had the most appalling chest infection. I've worked with children who are paraplegic, so I knew that a) she needed suctioning. b) she was probably living with psuedomonas. I've had psuedomonas and it's really bad news for us as once we have it its REALLY difficult to get rid of. Once we have it its like an open invitation for all those pnemonia causing nasties to come and have a party in our lungs.
I must add here that both my consultant immunologist and clinical nurse specialist had told those who should have been caring for me that I MUST have a single room. Sam I'm so sorry that you had such a bad time. Is there anybody in Nottingham who can watch your back over this sort of thing so you don't have to cope alone? Seems to me that this highlights how very very alone we have all been in such situations despite the existence of the PIA. After I had the meningitis I contaacted their society and got so much support. There is a nurse/counsellor available 24/7 to give info, advice & support. I wish we all had that.
Liz

[s162216]

Hi Liz,

It would have been fine normally as the two girls that I live with could have brought me stuff, one did actually come with me to the out of hours doctor and to the ED with me in the ambulance before going home at about 3 in the morning as she had something she had to go to early in the morning, but my mobile went completely flat and I didn't have a clue what either of their numbers were! Luckily I was able to get a text off to my mum before it went flat and I called her on the ward phone later on (her mobiles one of the 3 or 4 numbers I never forget).

The worst thing was the boredom though, I slept most of the first day in the admissions ward as I had had about 2 hours the night before (why do junior doctors decide they need to wake you to ask MORE questions just as you get off to sleep???) but that night on this other ward where I was surrounded by people 40 years older than me (one of whom at 3 in the morning thought it would be a good idea to try to walk despite the fact that he was unable to and ended up falling over loudly, of course that just woke everyone else up and there were suddenly a lot of requests for urine bottles etc - I just couldn't sleep after all this and ended up sitting on the bed looking out the window for 6 hours (you see some interesting things out the window at 4 in the morning...). There wasn't even a TV on this ward or books or anything. Still I had a few nice chats with some of the staff about medical matters (I read a lot of medical literature doing a Pharmacology degree) and a refreshing long walk with a student nurse going to/from having a liver ultrasound (and we got lost! The QMC is like a rabbit warren.)

Overall though I wouldn't call it a bad experience, at least the food was great! (No 'Heinz Chicken Soup with a crusty bread roll' which turned out to be some watery concoction with greasy chunks of grey chicken which was certainly not Heinz, like I got when I was in Bedford hospital about 12 years ago) Plus the staff were all lovely towards me and the other patients.

Sam

[liz2mac]

Lol. I can see the pictures. My husband John is an authour (in a small way) and writes such funny stories. I can imagine how he'd write that up. Bloke on floor. Can't be lifted because of moving & handling procedures, sleepy bloke missing urine bottle........
I'm glad it was positive overall. I suppose they don't have books/magazines available now because of risk of cross infection?
Off to take my 85 year old Mother (post hip replacement/heart attack in October) to the Dr's for blood tests. Should be quick, not too long to sit in the germ soup waiting room.
Have a good day.
Liz.