Katy, I can't remember how it was first discovered, but sister's blood problem was initially a rare condition where she produces too many platelets (sort of the opposite of haemophilia!). They've spent ages balancing everything out - too many platelets = not enough of other types of blood cells. She was fine, just having regular blood tests, injections sometimes, I think, and medication. I only heard about it after she was hospitalized with, completely unrelated, gastroenteritis. Of course,with the upset stomach (to put it delicately - I'm eating breakfast!) the balance of her drugs was lost, and she was very anaemic for a while and felt completely lacking in any 'get up', never mind 'go'. Symptoms much as you describe. After a course of vitamin B12 injections (not pleasant, apparently, but definitely worth it!) she was fine again. Back on regular (3 months???) blood tests to monitor her. She's gadding off on holiday every few months and regularly travelling to babysit her grandsons in school holidays (son & d-i-l both work!)
I hope they manage to sort you out. I know how utterly demoralising it is to feel so exhausted all the time. Hugs x
Thanks Ali for that information, I remember getting up, feeling normal, going to the loo, suddenly feeling really sick, then dizzy, then a whooshing noise, then wakening up on the floor! Think the B12 thing can be similar too, personally I'm just sooooooooooooo much hoping that whatever it is will be resolved soon as each day passes I just feel so tired, doesn't matter how many hours I sleep so know it's not normal !
Lovely that you will see your son, he'll have lots of news for you, sooooooo exciting!
Went into town with GD yesterday and she came running over with a toy CAMEL, she had some pennies to spend and bought it, she was really excited, camel has 2 humps and had a bell around it's neck, Hump and Dink watch out!!! Brought a huge smile to my face, camels are everywhere! xx
Ooops forgot to say some people know how to just put their big, fat foot into it and more hee hee, just think of the camels Ali and don't care xx
Wow that's amazing that your sister has B12 def, have never heard of it before! When you Dr Google symptoms don't seem to match mine but when I put in things individually it does match!
It may even be why I have Burning Mouth Syndrome, fab to hear your sister is doing so well. I feel quite excited because if it is, a lot of the problems I'm having will disappear. If you don't mind JCJ can you tell me what your sister's symptoms were prior to diagnosis?
mmmmmmmmmm about OH, it's very difficult.
Also went to chippie tonight, yummy yum xx
Not surprised you feel overwhelmed, Katy, but the Vit B12 deficiency causes a sort of anaemia which will make you feel exhausted. It's easy to treat. My sister has regular injections to sort her Vit B12 out and she feels sooo much better. Once you get it sorted out, you should get some of your mojo back - you just need to find enough mojo to get it sorted. Catch 22?? It's also an explanation for your 'black out'/fall that is MUCH less scary than other possibilities.
OH is still OK. He doesn't seem to be at all put out by his dx. I wonder if he is in denial? He took one tablet, but I notice he's not taken any more, but the specialist did say some people like to defer taking them because they have a reduced effect over time, so his shaky hand is still very much in evidence (and still annoying the hell out of me - but it's his body/his choice)
Had to properly scrape my car windows this morning. 😞 Winter has arrived. I was thoroughly cheered, on the drive to work though, by the sight of the High School kids walking to school in their onesies - (including a hulking 6ft lad!). Remined me of our high jinks - although none of them were purple fleece, rhinestone be-decked, or teamed with Doc Martins and/or skates! One of the Y6 boys at my school had a bright yellow fleecy Pudsey onesie on all day too. Brave boy. 🙂
Glad it's the weekend. I'm headed for the cream crackered bench - when I've just been down to the chippy to fetch my fish supper! Nom nom nom 🙂
3 years grumpy, celebrations indeed, don your pyjamas or bikini (lucky girl), hope your snottiness is lessening!
JCJ, vitamin B12 deficiency and low blood sugars will be retested and also tested for pernacious anaemia, still haven't made my appointment, just felt overwhelmed this week!
How is your OH doing??
It's FREEZING here and forecast is for it to get colder next week??? really??? Am back to wearing my ten layers of clothing and my big coat, can get my arm in my coat now, woo hoo so can wear my sling on the outside, that means I can zip up my coat, takes ages to get organised whew xx
Our village primary school is doing a Pyjama Day for Children in Need....... I must walk past the school at playtime tomorrow.......
Itchy skin getting less itchy so the stuff is working. Why am I making such a fuss about a minor condition???? Oh I know, cos it reminds me I've had BC.
And today is the 3-year anniversary of my WLEs - and I was told NED on Christmas Eve 2010. What a wonderful Christmas present that was!!! So having a celebratory noggin tonight in thankfulness for our NHS.
Hope you feel better for shedding those tears, Katy. Did your blood tests show low haemoglobin/iron?? I only ask because when I was anaemic I was desperately tired (and prone to tears!!) all the time. I was prescribed ferrous fumerate solution (molten chocolate mint flavoured nails!) because I didn't want iron tablets.....had to have them when pregnant and they made me sooo constipated!! (TMI??) Anyway, iron meds made me feel so much better.
FF's got a bun in the oven tee hee hee. 😄
Right, must drag my swim-weary bones off to find my pudsey T-shirt for tomorrow. Spotty day at school for CIN, but I've not got anything spotty (not even a spotty face any more...thanks to Zoladex/Tapoxyfen cocktail!!)
Visited the "CSL" bench this afternoon and have managed to fill a few buckets which will be emptied into the lake as soon as! Have had so many things going on over the last few months and have been putting a brave face on everything, today brave face has disappeared completely.................so deep breaths, calm down and get on with things,will move to the "teary" bench shortly. Hate the "CSL" bench!
FF a baby and a new hob woo hoo!!!
And a start to the **** shop,woo hoo!!!
Bought for GD the slippers that do "things" all the reviews say that they stop working etc but she had her wee heart set on them so I know what you mean FF.
Bought ED's gift, so only sweets and YD to do may just pop over to the "smug" bench instead xx
Grumpy - I have steroid ointment for an itchy condition/rash/eczema/whatever it is that I have. It's only on my back so I have never seen it! A contortionist has nothing on me while trying to scratch it and I find it is worse in bed when I'm warmer. The steroid ointment usually clears it up quickly but it leaves skin very dry so use plenty of moisturiser in between applications. Hope it's better soon.
JCJ - I also know someone with PD who is living life to the full. Hugs to you and your OH
Guess what happened yesterday..........I had a new gas hob fitted!! It's only taken me nine months to get round to it. I could have had a baby in that time!! Didn't even use it as dinner was cooked in the oven.
This morning I've done some internet seasonal shopping (I refuse to name it, it's too early). Bought the grandsons DS games and some books on their favourite subjects. Bought some vests as well (I'm turning into my Mother....."have you got your vest on? Must keep your kidneys warm". Why? What does having cold kidneys DO to me?) Sorry, I digress. I looked at an item that grandaughter wants and it's plastic tat and will probably break as soon as it's looked at but what do you do? I'd rather spend twice as much and get something that will last but she wants the tat. Arrrgh.
Right, I'm off......it's lunchtime.....might heat some soup on the new hob......or have a sandwich and keep it clean and shiny!
grumpy, poems had something itchy, mine was like heat spots so i think it was def an allergy to the new washing powder, gone back to old one and it's stopped! it maybe something like that.
JCJ so glad you have posted, a man i knew through work also had PD, in the 10 years the only noticeable difference in him was shaky hands, saw him again after a space of around 6 years and he is also still driving and doing like grumpy's friend all the things he's always wanted to do (he's now in his 70's), so very hopefully things will not change too much for your OH, the medication does really seem to keep things under control, it's just such a shock, big hugs to you xx
beautiful sunshine here, slept in this morning, did not hear my alarm and YD did not hear hers so she was late for work, first time ever. i feel soooooooooooo tired just now, thought that it was all the meds and obviously whats been happening over the last few months but did a bit of Dr google and symptoms are associated with blood level results so am feeling hopeful for the first time in ages............keep your fingers crossed for me girls! would be great if i felt more like myself.
Kay, are you still pottering and will your kitchen be finished soon?
Away to sing Grease songs and settle back on the "CBA" bench xx
JCJ - my friend with PD has continued driving since dx 5 years ago, and she's just had her 70th!!! and she flies off to all kinds of exotic locations without any problems, on the principle that she won't be leaving any money to her only daughter, just a house - so there!!!! She hasn't found the PD affects her temperament so hopefully your dear OH won't get another bout of the dark clouds. I do wish you both well and I'm sending you lots of hugs - your OH can have hugs too, altho my general rule is I do only AIR kisses to husbands, so MWAH, MWAH!!!
The Snot's Fair Fest is improving - no I don't have pet insurance, as for two 7 yr old dogs, when I adopted them, was WAY too expensive. Instead I keep a lump sum in the building society, referred to as the Dogs Bank Account. I'm sure Millie believes she will outlive me, and be able to go to Euro Disney on the leftovers.
Got some steroid cream from the GP today, as my skin is getting a bit eczema-like. Does anyone have this s/e? It's a bit of a bu##er as I wake myself up in the night scratting at my arms and legs - so I've cut my nails REALLY short!
love to all
Thanks for the support - and hugs - ladies. Hugely appreciated. It's so good to know you're all here rooting for us! 🙂
OH is still very upbeat and positive (at the moment: - he does sufer with depression, so I'm bracing myself for the fall!) and so I am determined to be too. I've spoken to colleagues at work who were very supportive when I had a mini melt-down this morning (can't do it at home, and the tears just came out when someone asked how OH got on yesterday!) Starting to hear of people who's life has hardly been affected by PD diagnosis, so I'm feeling more positive. Also we've talked some more, and although doc says OH has to inform DVLA, she will say that his driving will be totally unaffected. Phew! I thought he was going to have to be re-tested at best, or lose his license (and independence!) We discovered yesterday that he's in good company: Billy Connolly was dx with PD in September this year!
YD has texted to say she's making and bringing the welsh cakes (family tradition! Excellent antidote to all that rich food!) and all the alcohol for Christmas.She's also driving over to help me make mince pies on the 7-8th December. GF is letting her have the car on the understanding that she takes some back with her! 🙂 Really love it when we make the pies together as it seems so much less of a faff, so mI'm really looking forward to it!
Just been actual shopping (as opposed to online shopping, which I have also been doing tonight!) and bought a lovely jade-colour teddy throw (not a strange toy missile, but a thick-pile fleecy blanket) It brings on the hot flushes just LOOKING at it - nearly passed out carrying it around the store! - but it will be fab for YD's flat which is always so cold. YD was admiring them last time we were in the shop together, so I hope she's not got herself one!
Staff and children at school dropping like flies with the stomach lurg. I'm very glad I didn't have my immune system destroyed last year, and am hoping that my current slightly gurgly stomach will be all I get. Fingers crossed!
Hope the "snot fair" (as in it's not fair?!) doesn't last too long Grumpy. I hope you've got pet insurance - all those anti-b's must be costing you a fortune?
Right I'm going to change into my nightie and knit a rat!! (As you do???!! :p)
Oh dear back to "snotland" grumpy, lets hope it's over quickly this time.
Had a phonecall from doc no C problems woo hoo but a couple of other things have popped up so more blood tests and further investigation into faint so am very pleased with one part and a bit mmmmmmmmm about the other!
Hope you are ok JCJ. xx
JCJ - I have a good friend here who has PD, diagnosed 5 years ago. Bless her, this has come after nursing her husband (and her mother) as they retired from their guest house, so it's been full-on for 10 years. She is fine intellectually, particpates actively with the Players, just gets the trembles now and again so one of us ( the BOWS - bunch of widows) will profer a hand for her to hold, and has skin problems due to the anti PD drugs altho she has found a cream to cope with that. I know PD is a bit like BC in that it is a very individual condition, so no-one really knows how they will be affected. Just like us, there is help out there, and I am sure you and OH will soon get your strategy planned out. All the very best to both of you.
Update on the Snotty Nose situation - Millie has got green snail trails again so more a/bs from the vet, and I couldn't have my flu jab today cos I've still got the stinky cold. This is currently the House of the Snotty Noses as opposed to the House of the Rising Sun.
Christmas - oh yeah!!! We are going Next Door, and having their overspill guests in the spare rooms for a couple of nights. That sounds fun UNTIL we factor in a 'due date' of 23rd Dec... kettles are on, and all towels going through a boil wash..... I don't know very much about this stuff, as I am a childless single lady. Rev - have you got any advice??? or is it a case of run for the hills????
Golly gosh, exhausted what with the local politics, the local museum, the snotty nose, and the bloody awful stiff joints - oh and the constipation.
Early bed tonight methinks
Aaaaaaaaaaaah JCJ, hopefully drugs etc will keep PD under some control, such s***** news for you both, keep your chin up and take care, thinking of you and sending lots of big, big hugs xx
Yay!! Welcome back FF!! Sorry you've not been well, but glad you're on the mend. Also glad you haven't abandoned us! 🙂
I haven't seen Grease all the way through, either! I have to admit, I've tried a couple of times, but just can't get into it - no empathy with the main characters. I do like some of the music - the 2 songs I've 'adapted' are the only 2 I really know, (thanks to you tube for the original lyrics!) and I'll have to make up the story as I go along!!
Thank you all for your thoughts and well wishes. I'm trying hard to steer clear of the CSL bench. Spoke to OH on phone - he's putting a brave face on it, but they DO think it's PD. :'( I'll get more details when he comes home - he's gone for a walk. He did say that they don't expect his condition to deteriorate too fast but they've already introduced him to a "team of people who can help"! Trying not to read too much into THAT!!
He's been given a list of helpful websites, so I'll be doing some (non-google) research later! The burning question on my mind (which I'll share with you but not him) is how much longer have we, realistically, got of 'normal' existance before things get sh*t? 😞
Then I think of your uncomplaining sister, CH, and realise I need to get a grip!
JCJ - my fingers are firmly crossed for your OH.
Katy - so glad that you are improving.
As for those who have done or nearly done their Xmas shopping... how do you become so organised? I wish I knew the secret! Mine will be a last minute rush as usual I expect, in spite of all good intentions.
I have been rather poorly for a little while and hibernating away but am now fighting fit and raring to go again.
Our production is Grease? That could be quite interesting as I must be the only person who has never seen it! I'll try to follow the plot...... if I can find it! By the way, great song JCJ.
Must go now, rescheduled haircut apointment at 12.30. Back later.
fingers and toes crossed for your OH JCJ, hope you have good news, will be thinking of you xx
Glad you meant the re-phased version Kayteeb - I also had to read the original a few times to be sure commiserations weren't needed! Our Christmas day will probably be at ED and family's place - its the only house with a room big enough to fit 8 adults and 4 children for dinner. It doesn't mean OH and I won't be cooking though as she usually starts it all off and then we go and do the 'finishing' - everyone mucks in and we all take part of the meal. It is always chaotic after lunch with the very excited children all wanting to open their presents.
We then repeat everything on New Years Day - including some presents from the 'wider family' with even more people to cater for - at least another 4 adults will be there then. Already baked the Christmas Cakes - always have to make 4 - one for us, one each for two daughters and one for one of my sisters who is chronically ill - been in a wheelchair now for over 20 years (well she has been out of it occasionally to go to bed of course!). She is quite amazing and has managed to keep cheerful all this time despite the need for frequent hospital stays over the years. Best wishes for your OH 's appointment JCJ.
Hope everyone is keeping warm.
Very dark and wet here - but don't feel we can complain about our weather when I see the devastation in the Philippines.
Just sending you some hugs and good wishes for OH at the Parkinson's Clinic, and for you at school trying to keep it all together. The jittery bench comes in handy now and then. Keep it warm for me on Dec 10th - first annual mammogram!!
Kay "all over with OH and I" - completely mis-interpreted that at first (as in all over between OH and I) and was about to send you commiserations!!
You stay on that CBA bench as long as you want, it's obviously doing you good, Katy. You need time to rest and repair after all your pain/injury trauma. Had an email from YD with suggestions for presents for her & OH, so I went online and ordered them immediately, and the things ES mentioned. Just my OH to buy for, and some little things now. I love online shopping!!
I'm on the jittery bench because OH has his appointment with Parkinson's clinic at the hospital tomorrow. He won't let me go with him, so I'll be trying to keep it together at school!
Not sure what's happening for Xmas either JCJ, usually have everyone here, will still have everyone but at the moment do not feel up for a whole day, so have other ideas planned, will talk to ED this week to see what she thinks, if she doesn't like my idea it will be Xmas Dinner per usual, will have to wait and see.
Did you do your shopping?
I have done all presents apart from daughters, thank goodness!! Just little fillers for others, nothing big whew!!
Murky day here, not raining but very damp, not going out today, cause am still lingering on the "CBA" bench!
Am also feeling very tired...........keep nodding off.........collarbone is good, big difference from even a week ago:smileyhappy!: have not heard anything about blood tests therefore imagine everything is fine, cannot bring myself to phone..........bad behaviour, I know xx
You stay on that CBA bench, Katy until all the frost has gone. Don't want you falling over again!
I'll join you. I am sooooo tired today. It's lovely and sunny and I know I should be outside enjoying it, but I feel as if I've been hit by a bus today. Kn****red doesn't come close to it! 😞
ES paid us a surprise visit yesterday. 🙂 Seems aaages since we saw him. Lovely to see him, but when I asked if he'd be here for Christmas he said "No". I don't want to go down the ol' emotional blackmail route (and will need to stop OH doing that!) but I can't deny I am disappointed. It will be the first Christmas we won't all be together (OH, ES, YD & me). YD & GF coming so there'll still be four of us, so I just need to grow up!! 😛 After all, when *I* was 29, I wasn't going anywhere for Christmas (but that was only because we had 2 children by then!!) I was looking forward to ES meeting YD's GF because they have a similar sense of humour and I'm sure they'll get on fine. I suspect he doesn't want to be here, single, when the last 2 years he's been here with partner and her son, especially as this time his sister will be here with her partner?!
Right. Time to do some Christmas shopping - online of course! I can still spoil him with presents even if he won't be here on the day! 🙂
Sooooooooooo frosty here this morning, brrrrrrrrrr always leads to a beautiful day!
Not chancing going out till it's all cleared then quick nip to supermarket.
Bottom firmly placed on the "CBA" bench been up for ages and cannot work up any enthusiasm whatsoever!
If i start singing JCJ's songs it will perhaps give me the "oomph" i need, have to try and find my marbles anyway, keep losing them xx
Oh me oh my it's freezing here brrrrrrrrrrrrrr, heating on, old duvet wrapped around moi and am having tea early cause am starving!!
Am about to watch a movie so all good but will be joining poems on the "itchy" bench, bought a new washing powder and think my skin is not liking it one bit!
Collarbone not quite so tender woo hoo!!!
Was checking prices of hol booked a few weeks ago and on one website it's priced £600 more expensive than we paid, can't believe it......................so that's another woo hoo!
JCJ, your songs are rattling around my head tee hee xx
Brilliant JCJ - absolutely BRI-LL-I-ANT DAH-LING.... So got me singing along in my head (and chuckling)... thank you for that, and the hysterical baby!
That's it JCJ you are SANDY!! Song is brilliant and has brought a HUGE smile to my face!! Well done you xx
ps panda is cute!!
If that didn't cheer you up, this can't fail! 🙂
wow, Katy 14 hours sleep. I'm sooo jealous - but then you have earned it with the cr*p bad luck you've had lately?! I hope this means you've turned a small corner. Glad it made you smile, Kay. Hope this next installment does too:
Summer zapping gave me a blast
Summer Zapping happened so fast
I had BC, scary for me
But the docs cured it for free
Summer days drifting away
To oh oh sleepless nights
Tell me more, tell me more
Has it spread very far?
Tell me more, tell me more
While I prop up the bar.
I’m on the drugs, I get the cramp
I have night sweats, get very damp
They saved my life, I nearly drowned
In my tears, splashing around
Tell me more, tell me more
Did it give you a fright?
Tell me more, tell me more
Did you put up a fight?
Met up with friends in Morecambe Bay
We went strolling, drank beer all day
We ate tea in The Midland
We watched the sun o’er the sand
Summer fling, such a great thing
But Oh, oh the sleepless nights
Tell me more, tell me more
I’ve got my boob in a bag
Tell me more, tell me more
Wearing a bra’s such a drag
We’ve got friends holding our hands
We’ve got friends down on the sands
We’re getting on, no longer eighteen
But we had fun you know what I mean
Summer heat, Benchland girls meet
But oh, oh the sleepless nights
Tell me more, tell me more
How much cake did we eat?
Tell me more, tell me more
Were you walked off your feet?
It turned colder, that’s not where it ends
Because we’ll still be friends
We made a true friends vow
That’s why we’re doing this now
Summer heat makes us drip it seems
But oh, those sleepless nights
Tell me more, tell me more
jCJ amazing song! Love it!
Katy....BIIIIIIGGGG sleep! Yay!
gentle wave ~~~
batton down the hatches - it's raining cats and dogs (sorry Millie!)
love and hugs and spoons...
Massively comfy duvet for all that need them and all the goodies that are desired, yum yum!
Slept for 14hours yes 14 yesterday???????? Woke up at 9.40 this morning, woweeeeeeee! So am on the "still dozy" bench.
Benchlanders are not having a good time so perhaps we should sprinkle the "happy fairy" dust throughout Benchland, will have to throw a bucket over myself hee hee!
Just started to pour with rain here yuck xx
JCJ still think you would be fabbbbbbbbbbbbulous as Sandy!
In the Benchland, the wondrous Benchland
The lucky sleep tonight
A winge away winge away
Whinge away Kay, (sounds like a cue for a song??? :-p) We understand. Snuggle up under that duvet and here's a mugatea/coffee/tipple-of-choice and some scrummy home-made apple cake.
I'm on the kna****ed bench. New (temporary) Head at school and lots of visitors as we're joining an Academy soon. They kept popping up wverywhere while I was teaching. Very nerve-wracking!!
Only ONE snotty nose in this house now - mine!!!! Millie's nose has dried up at long last.
I do hope everyone is feeling 'better' cos all these s/e thingys are SO wearing, and they stop us from having a better post-BC existence. S'not fair......
Back to the TV and Whisky-n-hot-lemon Bench.
Grease - ooooh exciting! Is there a part for a grumpy old woman, please? Preferably non-singing, or at least singing that is MEANT to be dreadful.
Site meeting with the uni tomorrow at 9.30 am. Retired people don't DO 9.30 am......
night night all.
Katy, I just nearly puked up my tea'n'teacake I'm currently stuffing down my neck (came homefrom work absolutely ravenous, but where's a horse when you need one?? ) picturing myself in skin tight ANYTHING - never mind leather trousers!!!! Also,I certainly can't sing well enough (let's face it ..... At all) to be Sandy
Hope the change of meds helps, poems, constant itching is sooooo wearing isn't it?
Going to flop onthe tennis (recorded from earlier)/craft bench and knit my panda (not a euphemism!)
Which remindsme.... Masses of hilarity in staffroom at lunchtime reading Fifty Sheds of Grey. It was in the pile of books from a book company that regularly sells books to schools/offices at bargain prices) So funny. 🙂
ooooooooooooh JCJ, aaaaaaaaaaah how clever are you??? Bravo, bravo, personally I think that you should now have the lead "girl" part of Sandy, woo hoo!! Skintight costume et al, sitting atop a camel, am just picturing how absolutely fabulous the scenes and sets will be !
Here's hoping ta"poxy"fen works better for you poems xx
Fantastic. I'll be sing - er - croaking it all day now!
I'm hoping I can get off the itchy bench soon. My onco is letting me have four weeks off hormone tablets and is writing to my GP to put me on Tamoxifen instead. Just hope it's not out of the frying pan into the fire.