sorry not been around much. - Hughes Syndrome A...

Hughes Syndrome APS Forum

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sorry not been around much.

Suzypawz profile image
47 Replies

To me it's no excuse but I havn't beent too well recently & is embarrasingly struggling....so thats why I havn't been on here :(

My head feels not in the right place to keep strong for others at mo'....so thought it was better if I stayed away for a while.....every now & then I popped on to keep an eye on you but as we all know...... all the other lovely moderators do a great job...... so when one of us falls we dont have to worry too much :)

I hate being like this I thought it was payback for enjoying myself at the biker rally 2-3 weeks ago....but it isn't! :(

Felt very down & don't understand why too? well I know a couple of things that may not be helping....but anyway.......

Also about 7 days ago started to feel extra fatigued, achy, dizzy, struggling to do anything.....then on Tuesday I went to town as always, went to do my weeks shopping in our Asda & suddenly felt like I couldn't walk anymore, heart thumping, pain in chest, shortness of breath, dizzy, sweating yet shivering & shaking tremendously!

I phoned hubby to say he'll have to get me......I threw bits in the trolley so I wouldn't have to come back again & by the time I got to the till I thought I was going to pass out :( the cashier was lovely she kept asking me if I was OK....I said I think I am I'm sure it'll pass.....but she saw how bad I was getting & told me to go & sit down, she will do it all for me! another member of staff came to me & brought me some water.......they wouldn't let me out of their sight until hubby was there! They asked if I knew what was up was there anything they could do...but I explained it was probably to do with a disorder I have...I'm sure it will pass & that I was more embarassed of them seeing me like that as I dont come out when bad, I stay away so no one see's me like it.....that was what had bothered me the most :(

Been to the out of hours doc' he did a good examination but wasn't sure...blood pressure was slightly high ....again, white blood cells in urine...again, he agreed I had a possible fever & thinks it may be due to an infection? so on antibiotics.....again! but to see my do' on Wed' to discuss it further, I am sill struggling to do anything, can't stand for long with sweating, heart pounding & legs wobbling (more than usual!)

I shant stay away for much longer....just want to be stronger for you all.......shall still be watching over you :)

I have my pets watching over me & giving me cuddles......like the pic'!!!

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Suzypawz profile image
Suzypawz
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47 Replies
MaryF profile image
MaryFAdministrator

Hey you... we all get off patches... I am in bed every morning at the moment, I understand.. then back to bed by 7 in the evening, it is totally maddening, but all our contributions are valid, and yours are always so, and you do seem to be around regardless of what is going on. Hope you get better very soon xxx Mary F x

Suzypawz profile image
Suzypawz in reply toMaryF

Thank you for your lovely words as always hun xx

Hi

Why on earth are you apologising? It happens, my goodness, last week or the one before I had a very public wobble on here!!

I am so sorry that it has embarrassed you but try to look at it the other way (I love when we do this and then totally ignore our own advice later!!) there were all those random people who wanted to help you. That's wonderful.

And the term "payback" should be banned, if you coincidently feel wiped out a week or so after having some serious fun then it is not retribution!! I am shattered today and I haven't had fun at all this week - maybe that's payback, perhaps if I had had more fun I wouldn't be so tired - or at least I wouldn't mind as much!! hahaha

Be kind to yourself and you'll be back to yourself in no time. We all know how it feels and we all send our love and thoughts... If there is anything we can do then please just shout...

Give your animals a squeeze! I bet they love having you round a bit more!!

Take care

Tx xxx

Suzypawz profile image
Suzypawz in reply to

Thanks hun, I know 'payback' should be banned!

I am the one that normally says I'll take whatever comes to me as long as I can carry on some days as if I'm not that different!

But this feels different to the usual & the antibiotics dont seem to be working as of yet?

I shall cuddle the critters for you in abit! I've yet to get out of pj's.....

Fanx x

in reply toSuzypawz

haha I went for a lunchtime stroll and wandering about I started panicking that that was too harsh - I hope you know what I meant is that you don't DESERVE to feel knackered as a result of having fun!!

Sadly we all have to admit we're not 100% sometimes and like I said a week or two back it would be nice to not have to deal with it for a few days. But when we feel like this, we then beat ourselves up for being defeatist! being strong definitely has it's pitfalls!

You know the drill - if it's not right, keep pushing your doc until it feels right again! (ooh and as an aside there are these Nak'd cocoa bars that are all raw and non gluten and non diary and non wheat (sound like they ought to be awful right!?) but they have been fab for energy dips at work... and they are delicious! worth a try maybe)

Take care - and watch Columbo... that was always my hospital/recovery tv of choice... you one more thing...

Tx xxx

Suzypawz profile image
Suzypawz in reply to

Cheers Tasch I knew you didnt mean anything funny hun! & yes I know the drill ......sergeant Tasch!! :)

Hugs Sue xx

youtube.com/watch?v=rXLHWmj...

hee hee - at least you don't have a man cold!!

Suzypawz profile image
Suzypawz in reply to

Thank you Tasch! :) that did make me smile!....good point xx

jessielou profile image
jessielou

Hi Sue

Just glad you ok hon, well ok ish, we all here to support each other, bad, better n good days too!!

You do so much here and other places too, entitled to a break when you feeling so poorly hon!!

Try and keep resting if you can and hope doc can help!!

Take care gentle hugs love Sheena xxxxx :-) :-) :-)

Suzypawz profile image
Suzypawz in reply tojessielou

Thank you hun, hope you start to improve too........perhaps thats what it is...... I wanted to join you & have some antibiotics too!

Bloody tablets....hope you are improving?

Hugs, Sue xxx

daisyd profile image
daisyd

Hi probably someone has already said this but haven't looked at all other answers yet

I think you should have called an Abulance if you had chest pain etc with all the other symptoms it could have been a Heart attack.

I felt like that when I had mine the doctors couldn't say as the ECG didn't show up anything I had to wait the 12 hour repeat blood test,

If you are still unwell ? A trip to your gp may be needed

Can't remember what medication you are on but good luck I hope you feel better soon

Karen xx

Suzypawz profile image
Suzypawz in reply todaisyd

I have an appointment booked in for Wednesday with a doc' I can trust......I'll wait till then unless something else happens, ta hun xx

kathyD64 profile image
kathyD64

Hi Sue so sorry to hear how unwell you are currently - im like you i hate for my family to see me when unwell esp my daughter its silly really but its hard because people without this illness just dont understand that we can feel dreadful for days weeks but then look fine and smile and be energetic - it seems to them anyway soon home straight on the bed to rest ;-) its our pride i think plus our coping mechanism...

anyone else with those symptoms would have got an ambulance - prob is a bad experience and because we often have transient issues can put us off but you must have looked unwell and glad you had the nice girls in asda look after you ;-)

hope you feel better soon - love your picture ;-) much love to you kathy xxx

Suzypawz profile image
Suzypawz in reply tokathyD64

Thank you Kathy, yes I am a very 'just get on with it person' & I think I have felt this coming on for a few weeks now but kept thinking it'll pass.....

glad you like the pic' :)

Hugs, Sue xx

jetjetjet profile image
jetjetjet

HAY BABE - are you sure you are ok ?? that would of put the fear of god in me . i'll be calling you later today for a chat , you hang in there you .------------------------------------------- uncle bunny benny gimpy

jetjetjet profile image
jetjetjet

o my god Tasch- i dont know about our Suzy BUT the french maids -----------WOW , they certainly picked up my heart rate.------------------------- gimpy

Suzypawz profile image
Suzypawz in reply tojetjetjet

Thanks jet, dont worry about me, look after yourself bud....& you watch your heart rate with those cheeky videos of french maids!!!!

Take care bud.....I'm a fighter too....I'll be ok :) :)

Renae profile image
Renae

Here in the U.S. Aps is considered an "invisible" illness, because we look fine on the outside...

feel better....

Suzypawz profile image
Suzypawz in reply toRenae

I know....thats why we get looked at funny when we have turns like these!! when I walk I often wobble of to one side to the next & I get looks like....ooooo look she had a few!!!!! :)

Jane-Martin profile image
Jane-Martin

Hi Sue, sorry you feel so yuk. Please make sure they check your heart out. Heart attacks come in many disguises as does heart valve problems. And Endocarditis! We are suceptible to these problems, so just get it properly checked hon. I hope you feel better soon. Love your picture. Jane xx

Suzypawz profile image
Suzypawz in reply toJane-Martin

I will do hun, I know heart problems run in my family but they havnt reared their ugly heads until they turned 60+.......

I lost my Dad, one of my sisters, one of my brothers has had a pace maker fitted & my Dads brothers also have problems...I am 42 & with being on warfarin hope I wont (or at least not yet!) will go down that line yet?

Glad you like pic' Sue xx

Jane-Martin profile image
Jane-Martin in reply toSuzypawz

I am mad cause my computer has died!....I have so much I want to say, but tiny buttons on my Blackberry prevent me from doing so! I can't wait to borrow my friends computer next week. Then I will express myself better! Well, I hope so!..... I am so very sorry about the loss of your sister, I lost my sister 12 years ago, she died from a clot on her lung. Warfarin is one of my best friends...believe me...but it won't prevent a lot of problems we are succeptible to (sorry, no spell check on Blackbery phones!). II am sure you will be fine, but we will all feel better if you get your doc to check your heart and lungs out. Are you feeling better?

Suzypawz profile image
Suzypawz in reply toJane-Martin

I'm very tired, painful & dizzy & had to find a seat for a bit last night :( security gaurds gave me one of theirs! & I know most people jotted around the festival which is a good thing I suupose in these cases.....they were all keeping their eyes on me wobbling around with stick in one hand the camera in the other!! :)

The bands were great last night.....I know I'm struggling....but to me its soooo worth it....I cant shake my hair around this time! as I KNOW I'll fall over !! but I dont care too much :)

Hugs....one more day then I can rest again till appointment xx

GinaD profile image
GinaD

Ditto from me about checking for heart involvement!

And I empathize with your embaressment, but I also ditto the stated truisms that you should not apologize!

I hope today is a good day -- for you, for me and for all of us. Swallow (or inject) your meds and soldier on!

Gina

Suzypawz profile image
Suzypawz in reply toGinaD

Cheers hun, we are a strong (or stubborn) bunch arn't we?!! I dont feel great but I'm just trying to get by.......

Sue xx

jean48 profile image
jean48

Love the doggy picture. My dog is always there also to make me feel better.

Jean

Suzypawz profile image
Suzypawz in reply tojean48

Glad you like x

SueLovett profile image
SueLovett

Hi Suze dear mate,

Upset you are having such a rough time.

Sorry to tell you I am feeling pretty much the same at the moment.

I have had pain everywhere and depression v bad. Probably didn't help that I had one of my wierd turns last week and walked out in pouring rain to go to station (8 MILES I CAN'T WALK HALF a mile normally) to get on train to Scotland. My husband found me 3 hours later soaking wet and pretty much unable to walk. I am officially the NEW Paddington Bear!

Have been stuck in most of week with curtains pulled! Malc away working which doesn't help.

I did emerge yesterday to take Hortense to the vet.

Enough about me I agree with Karen you are very naughty not to have called the ambulence. You must swear on Sugarplums life to promise to do so next time!

I so hope you will pick up soon special animal mad mate. If not I still have my long black riding boots we'll put one on each, I might even be able to find my spurs that should kick us into touch. Call any time we are both good listeners.

Lots of Love Sue

p.s. Love the man flu thingy Tasch made me laugh a small miracle

Suzypawz profile image
Suzypawz in reply toSueLovett

Hi hun, I knew you'd tell me off!! I'm not swearing on sugarplums (Salems) Life!!!! :) I'm too stubborn to put people out :(

Yes we'll have to chat soon, missed our calls :)

Hope you are getting better soon too xx

Suzypawz profile image
Suzypawz

Thank you for your posts, I'm sure I'll be ok till Wednesday when I have my appointment with the doc' I can trust....this is the only thing.....if I try to get another appointment earlier I don't trust any other doc' fully....as for the hos' I certainly havn't had great results there either!

don't get me wrong...I have alsorts going around my head about this at mo' as antibiotics still arn't doing anything & my body is having an arguement with it's self & making things worse! I know you know what I mean :(

I attempted to go to a couple of shops with hubby a couple of days ago & I felt like I'd done a work out!

We have a music fest' here from Fri' - Sun' hubbys bands head lining on the Sun' & I'm attempting to get for at least a couple of hours on each.....having to use a stick at mo' too as keep getting unstable, also friends are taking me & another lady a chair each for when needed......got warm clothes ready & umbrella.....I know your all going to tell me off now but it's what I love .....the atmosphere at these is terrific & yes I'm a stubborn cow! .......but it makes me feel alive....for a little bit......but with more concequences I know :(

I know after the one last night (we were only there for 2 hours top) the pain came back in my right part of my stomach / ribs.....its like where I had my gall bladder out 5 years previously also shivering all night even with hubby next to me & all morning. I didn't get up till after 12pm!!!

On painkillers now, see how I go, I have friends to bring me back if I get worse....but just don't want to miss it also 'Inme' & 'Saxon' are playing tonight!!!! so going as late as possible mainly just to catch them :)

I'm sure I'll be fine...please dont shout at me....I know I'm going dizzy already....I'll come straight back home if anything else starts....hubby will be staying at fest' to keep partying without me :( but 'thats how the cookie crumbles' in our house!!!

Hugs to you all, Sue xx

jetjetjet profile image
jetjetjet

you be good there Suzy or we will send sargent tasch down with you . an i may take a swim over my self , now what do you have to say about THAT .. I.ll bet i'm just scaring the life rite out of you . ---------------- NOT_______ you just be careful for me please !!!! but do enjoy --------------your purple ,gimpy, bunny!

GinaD profile image
GinaD

Sometimes 'ya just gotta drain the glass come what may! Hope you got it all -- the music, a late night out AND no repercussions!

My hubby and I saw the Rope String Band at one of the Charleston Festivall concerts today. Fun. There was a little girl -- @ 5, sitting behind me and she giggled and giggled throughout most of the show. She certainly set the mood for all of us. I'm betting Mom will only have to barely lift the blankee half way to her chin before she is over and out. And I did a lot of walking today, so I may be over and out soon too. (Here's hoping that Uncle Arthur doesn't wake me up with some of us midnight complaining.)

Do let us know how the concert went.

Suzypawz profile image
Suzypawz

Thanks jet, I'm ok bud, just tired & painful.....but I'm ok, got a lot of peeps with a watchful eye here as I know many people at the festival in many areas....so thats useful! You get yourself right....just one more day to go then I can chill again till docs' appointment.

Cheers bud, Sue.

Fest' went great....bands were fantastic! for all of you thats my friend on face book I keep posting pics on :) I'll put a link on here when I have them completed......

One more day....I'll be ok....hubbys tonight! xx

jessielou profile image
jessielou

Hi Suzi

So glad the concerts gone well, would have loved to get away from pub, (for those that don't know I live in a.pub) and come to burfest, love watching your guys and Saxon etc!!

Sometimes we just have to use all our spoons, then deal with consequences!!

Life not worth living if you can't have some fun and get out there and live it!!

Really hope your gp follows up on this, gets you feeling better soon!!!

Have the rest of a good Sunday.

Take care gentle hugs love Sheena xxxxx :-) :-) :-)

Suzypawz profile image
Suzypawz in reply tojessielou

Would have loved you there hun :) I feel like my stubborness has kept me going this weekend.......but I feel I really shouldn't have :(

I hope you are getting some improvement with your docs?

I shall hopefully call you sometime tommorrow, hugs hun xxxx

jetjetjet profile image
jetjetjet

And your not a cow.

jetjetjet profile image
jetjetjet

and if you think your a [cow] i'm sure there are farmers thru out the world that would jump at the thought of having you in thier pasture. {THE PRIZE COW SYNDROME} the celebrity cow. ------ how have you been feeling after your concert adventure anyways ???????????????? . purplish ,not so gimpy me.;-) :-):-):)

Suzypawz profile image
Suzypawz

Hi all.....just managed to last the weekend, security gaurds bless them gave me a chair when ever I showed up next to them in the end as they saw how I was!!

It was a great weekend took a few pics, couldnt hold camera up for very long as kept shaking & weak :( but loved being there........... I had to sit on the step of the mini bus in end outside the tent where Bon Jovi uk were playing as couldnt stand up anymore :( but I took a few pics at the beginning.

I dont know if I posted this link to the 'Jovithon wed did which is shown here at our Shenaas' pub! thought you might like this :) youtu.be/tzC9jZAQKHk

Still hav'nt eaten properly now for over 2 weeks, feel so sick & in pain attempted alsorts & just end up throwing it away.........some cereal, toast & fruit smoothies I've managed........wish I knew what was going on....1 more day & hopefully will get some answers

Yesterday I got up for a drink, had some tabs....had to go back to bed! woke up at 2 30!!!

Got up cleaned kitchen, dusted livingroom.....had a drink had some more tabs.....had to go back to bed again.......woke up at 6 30!!!

MY DAY HAD GONE!!!!!!

Today I went to town did a bit in Asda got taxi back.....sat on sofa ever since as really feeling sick now & my stomach / ribs is really hurting ............. its wierd but it hurts where I had my gall bladder out 4-5 years ago ???

Was sweating & shaking earlier as I have been all week - 2 weeks if I stand for more than 10 mins, now shivering ??

So tired, I really hope they find out whats up as its really worrying me now :(

sorry jet I keep missing your calls :(

Hugs to you all, hope you are ok xxxx

Suzypawz profile image
Suzypawz

Hi to all you lovely peeps, I am still finding it a battle to just do anything with the pain, sweating, dizzyness, shaking etc..............but I've been to docs yesterday & she is stumped too! she cant understand why I'm getting pain in 'gall bladder' area? & is concerned I'm not eating much at all......also all the other things going on....,so she's checked blood pressure (which was ok this time) felt stomach, listened to chest & back ( which seemed ok ) ......so she's sent me to have blood tests done ( which included diabetes & celiac ) & urine sample again, I've done that today, just have to wait now for results & see doc' again in 2 weeks. Had inr checked today too, that was 4.0 so thats ok too.

With the scare in town I've had an ID bracelet part engraved & I've combined it with an old bracelet of mine & made my own............

s794.photobucket.com/albums...

Right need to summon some energy & put pets away now & cook them a dinner.....hugs to all xx

jetjetjet profile image
jetjetjet in reply toSuzypawz

im watching you------------------- a deal -is -a deal--------------------me

Andrewl profile image
Andrewl

Hey, BIGGEST HUG......keep going, and be strong. We are all here, I have been away too, and just back. Take care, and take comfort from us all. xx

Suzypawz profile image
Suzypawz in reply toAndrewl

Hi Andrew, cheers I will.......nice to have you back, how have you been? x

Suzypawz profile image
Suzypawz

Still not well ..........the pains in stomach/ ex gall bladder area just isn't getting any better, forcing bits of food down me, was sick too yesterday & had a constant migraine through the 3 weeks of getting worse too which hasn't helped!

Trying to do bits around house / garden.....but can only last about 10 mins then start going funny again! can't go on comp' for too long either because of migraine & keep feeling sick!

I hate it!

I wouldn't mind if I could at least get my images edited on the comp' I need to get done!!!

A couple wants me to photograph their wedding on Saturday! I have got to try to get them ok for them :( they only want the ceremony & family shots after done....so I'm keeping fingers crossed........hubby's with me so thats a relief......then we have to travel to a gig & possibly stay over in our caravan we havnt got to use yet! :) it's our anniversary weekend so we wanted to try to make the most of it & we love music festivals!!

At least if the caravan is there I could go in it & still hear the music inbetween whilst resting I suppose :)

Suzypawz profile image
Suzypawz

Tests results have come back....they are clear which is great...but it still leaves a ? over it all .

The doc' asked me to come in again this morning, she asked me to do another urine sample & it still shows a lot of infection she pressed my tummy area & 'gall bladder' / liver area & she says she could feel my body tensing up in that area which she says was subconciously.....as if it was trying to protect it due to the pain I'm having.....she has put me on another course of anti biotics to see if it helps with any of this & sent of for an appointment to have a scan done in liver area now too.

We went out for dinner last night & I attempted a little...I ordered ham, egg & chips & tried my best I managed 2-3 chips, 1-2 egg yolks & a little of the ham......everybody finished it off between them so I didnt feel so bad.

Hopefully this will turn around soon....my legs & joints are starting to hurt more now as I knew they would....they always do if I don't get to the gym for 3 weeks or more & do 2-3 times a week's exercise it's a vicious circle .....but wether I'm ok or not next week I've decided I'm going just to go on the leg machines & perhaps the swimming pool I think it will help me build my self back up & make me move around better than I am at mo'.

Hugs all xxxx

jetjetjet profile image
jetjetjet

hay - princess--- remember what we dicussed asout the A1C tests,. how did that pan out ?? wish you could eat more with out the problems bud !! have you tried a high energy drink ? or wouldn't that matter . lets hope they can get a handle on this soon for you hon --------------- thinking of you --me

Suzypawz profile image
Suzypawz

Hi jet....yep all results came back ok...including urine tests....which have proved as having infection in docs room but ok at hospital lab!!?!!

Hope you are improving bud :( you do worry me.....& stop worrying about me... I will be ok :)

Really trying to eat a little more over the last couple of days.....pain still bad in 'absent gall bladder area' still.....

Had a walk across our local bridge on Thursday from town to docs for inr test & see doc' again about all this.......had to stop 10 - 15 times & made excuse I was taking a pic' of stuff as going along bridge! :( incase any one passed me in their cars I may have known!! ..... well as it happens I had a few comments on face book & a couple on Saturday that I know & they had said they had seen me & it looked like I was still struggling & were going to stop to see if I needed a lift...but remembered who I was & knew I would have said no anyway!!!! well I thought I had fooled others! : ) I should have worn a disguise too!!! :)

Inr was 5.6! so got to go back on Monday to see what it is then....she said it may be down to the lack of food or the antibiotics I was on.........

Still waiting for the scan appointment.

I'm trying to catch up with it all on here......& will put the images & videos on from the London meeting soon....I'm trying to catch up with everything :)

Hugs to you all....hope you are as well & happy as possible.........think about all of you all the while :) xxxx

Suzypawz profile image
Suzypawz

Here is a slide show of the above walk!! :) thought I would share them with you xx

s794.photobucket.com/albums...

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