Sticky Blood-Hughes Syndrome Support
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Dragging myself up!! AGAIN!!!!

Hi all,

Where to start, today I fell/passed out in bathroom, kids fetched dad, I came round pretty quick, but lost speech, gained a few more pretty bruises and broke the bath panel, oooops, then slept for about 5 hours, this is my bodies revenge for doing too much the last few days! Don't think the Hughes likes the heat either. Speech back now, much to kids and partners dismay!

Daren't move to far tho, still dizzy, monstrous headache, awful nausea, maybe a migraine again, cannot sleep now either,

Struggling to eat last few weeks, nauseous etc.

Stress over whether we staying at this pub easing, hopefully things getting sorted so we can stay! Fingers crossed!!!

Took son to see ortho paediatrician, didn't get to see consultant, had to see registrar as consultant running late, so blank looks and glazed eyes when tried to explain my autoimmune conditions and sons similar symptoms, he only interested in his back pain, he did actually book an MRI scan, but didn't note the difficulty of getting a 12 year old autistic child to lie still in an enclosed space, so having to contact autism team and scan department to see if we can sort something out to help!! My son has needle phobia too, so Oh dear another rough ride, such is life eh?

Our border collie due to have her puppies in next week or so, kids so excited, pretty much managed to find great homes for the pups, thank goodness. Will post pics when they arrive.

Wondering when life will just get a little less fraught and stressful, might go live on a deserted island or something. Give me peace, pleeeeeeaaassssseeee!!

Hoping for better days for all.

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

13 Replies

Hope you get better soon, from another, not in the land of nod! Mary F x


Oh sheena what can I say but that I'm sure it WILL get easier my love! Hang on in there whilst you are going along this bumpy bit!

I could not help thinking that you should have had that head checked out as it sounded like a bit of concussion. I hope that's better now.

Thinking of you x


Sheena, so sorry to hear you are having a bad time, you offer so much support here to others. Feel better soon xx



Go to the hospital ! Or phone your Heam - Neuro DOC !

( I came round pretty quick, but lost speech, gained a few more pretty bruises and broke the bath panel, oooops, then slept for about 5 hours)

Make sure you tell them everything ! Take a copy of the post with you - or phone consultants secretary !!!

I also knock/tire myself out by doing too much Cleaning the bathroom is a guarenteed killer feel asleep once whilst scrubbing the bath :(

But my husband takes up the slack he does all the housework I do surface level stuff stop the bending and stretching bits but sometimes you just feel so god dam guilty you have to do stuff the you realise only too late that things such as cleaning the bathroom is far too much and you suffer for a week afterwards - took me 3 hours once to clean the bathroom everything in my life is on go slow



Hi Sheena :

I am new to this site, but as I have followed the past month I have noticed your input to others is usually full of compassion, strength and common sense, I never realized your own hands were so very full. Now it is time for you to take your own advice! I agree with "thegaul". A fall/pass out with loss of speech is justification for an MRI or at minimum a telephone consult to document the event to your case. It could be a seizure, a clot that may surprise you later. A completely new symptom. What if the kids could not find Dad this time? Or next time? For their sake, get to a hospital. Even if it rules out everything, that alone is knowledge gained.

What was the reason they wanted to give your autistic son an MRI? Perhaps when you contact the autistic support group (great idea) THEY could give you the reason for the current MRI (as well as ways to get him through it. Perhaps sedation or "open MRI' which is not as accurate as a "closed" MRI) and you could inquire as to if they have suggestions as to how you can separate symptoms which you believe could be APS in your son and those that are growing with autisim. Begin now and write them down in a journal as they occur so that you have an accurate list (brain fog defense). I wanted to give you a heads-up on the controversey regarding the contrast (gadolidium) they use in an MRI in the States. There are now clinical studies that prove MRI's with contrast given too close together or too many over a short history have proved to damage the renal system. The body's entire cleansing system; kidneys, bladder, etc. You might get the opinion of the MD whom is ordering the MRI's for your son regarding these findings.

If you have a cousin, aunt, sister or best buddy (my personal recommendation) that could take a little weekend getaway with you. Husbands need not be present. ALL GUILT STAYS AT YOUR HOUSE! Ideally, someone aware of your load and could spend a weekend at a bed and breakfast with the sole purpose of leaving all guilt behind and pampering YOU. Doesn't need to be expensive, it just needs to be away, But a few bubble baths, massage and general pampering certainly could not hurt you. A little time to re-center can be a great medicine. How long has it been since you spent that kind of time on you, by choice, without APS knocking you down for the count so that anything like that could not be enjoyed?

Lastly, remember. "This, too, shall pass." Soon you will have a whole different set of problems to fret about. I say that in all humor although it is unfortunately true. Humor is great therapy.

I wish you peace and quiet, secret surprises, and no pain or guilt for at least a week. Prayers, hugs and smiles to you. And may this time turn to better times quickly for you and your family.


Hi hon

Thanks for your lovely comment, my son having back and severe hip pain, headaches, stomach problems, hearing difficulties (says his ears feel full and he cannot hear) this is intermittent, but distresses him a lot. The MRI is to rule out mechanical problems in spine.

I'm usually quite adept at juggling all this, but bit too much some times! :-) :-)

I don't stay down for long!!

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


Hi Sheen, some heartfelt and sensible advice going on here! I do agree, despite having nocturnals leanings with flares as most do.... a bang on the head is a bang on the head! Let us know how you are doing please. Mary F x


Are you ok hon?


Hi all

Thanks for all your lovely comments, after reading these and a severe telling off (shaling his finger at me) from our Jet in the states, over the phone, I rang gp to make him aware of this. He arranged appointment Monday am. I have very low blood pressure and think inr probably too low! Gp Also insisted if I feel anything not right to go straight to A n E, he will speak to them and explain my conditions etc.

I am resting, confined to my room, my partner insists I stay in bed, so I am!!! Just slept for a few hours, still headachy and sicky but better than I was.

I hope all well today.

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


Well done Jet in the States!

A good idea is just a passing thought unless it is acted upon and Jet acted! Now you have to act on behalf of yourself. Make yourself take it easy this entire weekend. Listen to yourself when you don't feel "quite right". That "not quite right" could be of great significance and the earlier you ACT upon it the less harm it can do you. Until you see the doctor. I must admit it gives me great relief to know you are going Mon. Even though I'm sure you'll feel better by then especially if you rest.

Hey! You know what I just found? The APS Foundation of American, Inc. link. (Just put that in google) Please correct me if I'm wrong, but do I remember you are from the Southern States? Alabama maybe? Hon? Much can be gleaned from this site and you might want to SIT STILL WITH YOUR FEET UP and poke around it. Very well organized. They can sure share with the UK. The UK is very welcoming globally. Check it out. Keep us informed as to your appointment on Monday. I wish you healthy dreams.


Hi canaryDiamond

Thanks so much for your lovely comments,

I actually live in Leicestershire in the UK, My family and I live in a lovely village pub he runs it, while I try help as much as able!!! Not much now as am still resting!

Headache clearing a little, feeling a little better! Very tired but that's not unusual.

Glad you found the APS sit in America, have looked around it before, lots of useful info on their too.

I hope you're ok today

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


Hi hunny, I left you a couple of messages for you via mobile & facebook....didn't see this?!!!

I'm so sorry what you are stil going through :( it's not fair......are you still up for asking Prof. Hughes for a 2 for 1 at St. Thomas'!!!!!!! :)

You really need to be sorted out hunny.........................

Big (but gentle) hugs to you, your lovely family & your doggies & the ones on the way!! :)

Enjoyed coming for a visit with the girls the other week to yours.....will have to do it again soon if you not able to get to our neck of the woods yet?.......

Love & hugs lovely lady xxxx


Hi sue

I reckon it's got be time for a bogof offer, and a run to London, well get lost on the trains etc. Dora and Paddington on their travels again! :-) :-)

Going see favourite gp again on Monday, he's been lovely, overruled things and increased warfarin to bring inr up to 3.5, checking blood pressure regular as well, cos its very low!

Think will be referring me for an MRI, see how the brain coping! Borderline anaemia again, so lots of possible causes for me falling over!!

Will have to catch up soon hon!

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


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