Sticky Blood-Hughes Syndrome Support

Been feeling really low and not sure why (Loooong blog! sorry)

Hi all

I've been away for a while - all sorts of things have been happening and I needed to concentrate on them for a bit! Sorry.

Also I am sorry to admit that I have come back here because I have an issue. I am just feeling so low and can't seem to drag myself out of it. I am trapped in the same old cycle of not knowing whether there is something genuinely medical that needs to be looked into and whether it just a result of my circumstances.

So here's the home life first:

I lost my pupy who had kidney failure, I lost him at Easter but I still feel a bit lost without him. I don't think i've had such a strong bond with an animal before - probably because of the kidney stuff - even my horse! Incidentally, I think I have found a better home for the horse so he might be moving away too, not looking forward to that although it is definitely the best thing for him! I left my job of 5 years and moved to a new one - and so far this new one is a disappointment, I am bored and I am dreadful at being bored. I was taken on as a specialist and so far I have done very little of that!

And now for the good news: I have a new man in my life - he's a good friend and we have known each other for almost 12 years. He is delightful and I enjoy the vast majority of my time with him. He is bright and funny and ambitious. The thing is I struggle to talk about my health stuff with him... especially when I'm having such a hard time at the moment and I don't know why. I can't speak to my family either because they are all so stoic...

So healthwise:

The big ones first - as far as I know my tansplant (Kevin) is still behaving, my Lupus is under control and my APS managed. However I have had side effects, the whole time. I have to go to annual skin cancer check-ups, 6 monthly colposcopies, had a breaast lump scare last year, in the past I have had shingles twice, viral meningitis and german measles, various knock-out viruses and to be honest I think I am a bit exhausted. I have been battling all this for almost 13 years and I really wish I could take a break. I would come back and take it all on again but I just feel a bit swamped at the moment.

The one that is causing me issues at the moment is the HPV virus - warts to you and me. Speaking to a doctor yesterday I said (embarrassingly through tears) that I can cope with the ig things but the side effects are the ones that destoy my self confidence and self-image. I used to have these bumps (sorry can't say the w-word again) all over my feet - to the point that i couldn't bend m big toe on one foot - I had hundreds of them, and i have had a few on the insides of my knees and my hands... they have emerged on my cervix and have decided they like this last region!! Last week, after my colposcopy I ended up in stirrups again having my undercarriage frozen and was told there was no guarantee that this would work... but i should repeat it weekly for 4-8 weeks to give it a go. The thing i hate most about the illnesses are the power they hold over me and as much as i don't want to go I have to leave work (again) to get treatment! I know I have to and it's fine, I'll do it - I would just like a break...

And the constant reminders; taking pills twice a day - injecting Clexane every morning. And then the smaller things - having to remember to drop off and pick up prescriptions, arrange for sharps box collection... I have just had enough!

I am so sorry for the rant but I am really struggling to keep the tears under the surface.

Some great points:

I am still completely able, my two dogs are awesome and well behaved and happy, my new job did take me on as a specialist so they obviously think I am bright and capable, they are just a bit quiet, my horse is happy, the sun is shining and we have a four day weekend coming up, and I get to spend it with my best friend... And I have a few fabulous friends that I can talk to about the healthness who really listen and really care and I will love them forever for that (I can feel myself welling up thinking about them - human kindness and caring sets me off more that anything else!)

So - many, many thanks for making it this far through my rant - you are a true superstar...

One question: Any thoughts???


23 Replies

Goodness me - a hell of a lot on your plate... with no break from it. It is not as if you can have a holiday away from your self is it? Better out than in, is what I say, although I tend to let mine out and get on with it, ie back on the horse etc, but it is good to stop and take stock once in a while, ie is it really as much as this going on? and yes it is.. just acknowledging the extent of it is a good thing, even if you move on after it. I also think that physical illness and the implications with what you have must weigh heavy and drag you down. It is not a crime to feel tired. You sound like you need to be sent to lie on a hammock between two trees with your favourite music plugged in on headphones and a ban on anybody who irritates you, coming within ten miles.

I try not to lean on my partner, prefer to lean on myself... however not to ever tell him would be self destructive, as he kind of likes to know and feel that I am close enough to tell him.

I would take the odd week out and away if you can, even if it is not far! Sorry about the endless ailments... mine drive me mad, and the children's and it can feel so soul destroying. The next person who sees me covered in psoriaris from head to toe, when reacting to the latest sore throat in the house, and offeres to make me chamomile tea and give me a bach flower remedy for stress will be possibly strangled etc etc. People do not always understand autoimmune... unless of course they have something similar xxx

ps you are welcome to come and sulk by the sea in Suffolk with me if you like... and I promise NOT to behave x Mary F


You poor thing, you have had a lot on your plate :(

I'm so sorry to hear about your puppy....I know all about the bond between our furry loved ones & us.

I'm sorry to hear about you feeling you have to rehome your horse now too....that must be a very hard decision to make.

Glad you have found a good man tho' :) I'm sure he would want to know about how you are feeling tho'? it would probably bring you closer together & he can support you when needed too instead of you doing it all on your own hun.

Dont worry about being on here, we all understand we need some time out every now & then.

Oh dear I do feel for you on the 'side effect' of your tabs', it cant be nice.

I'm glad you have friends that listen & your lovely dogs :)

Maybe you could arrange for time away with either your male friend for a while or your friends.....just to let a bit of steam off, we all need time out, dont feel so guilty about not being on here & try to get away for a while.

Thinking of you hun take care & strong, hugs.....Sue xx


Hi Tasch you deserve a medal hun for all what you are going through - so sorry of your horrid medical time but delighted for you with your new man in your life - i agree with Mary to try to deal with this on your own without involving your partner - he probably would want you to share how you are feeling - if it was the other way round im sure you would want to know ;-)

really sorry to hear of losing your puppy ;( i cant imagine going through that rosie my 18month yr old dog has been with me since this latest bout of bad health we definately have a strong bond!

take care hope leg in stirrups bit comes to an end soon - i had coloscopy without treatment that was ouch ouch ouch! kathy xxx


Thanks guys

I am normally so strong and so happy and it is just so frustrating to feel beaten by it... even although I know it's just temporary...

but, bless him, the chap doesn't get it - he told me that it is destructive to come back to the point of being upset by it all, and he's right. and most the time I can just deal with it and get on with stuff - so why can't I do that now??

I think you're right, I could do with a break, even if I can't escape the pills at least I can escape everyday life for a little while...

It's just so frustrating to feel down at the best of times but I just seem to have run out of steam to fight it off!

Mary - the palm trees and music is a plan... and thanks for the offer of the Suffolk sea..

Things can only get better huh!?

Thanks again for your kind words - it really does mean a lot to not be on my own!

Tx xx


Take me up on it, tons of room and never a dull moment x


Hi -Tasch - Sorry to hear things are going on the rough side , i had said to you before that you are a remarkable person , with alot of grit . i think sometimes it gets to us all. from the start of your letter to the end it seems you are starting back on rite track, you have more than what it takes , look what you already have over come !!!!! was wondering of you in your absence. hope you next note will be of better outlook , you deserve it as do we all - great to hear from you again -------------------- jet


Thanks Mary - and thanks Jet

I have all the positivity there - I just can't seem to access it for any longer than that specific thought... do you know what I mean? I'm normally very happy and it's difficult for me to dwell on the bad things but this time I just seem bogged down with blurghh and can't seem to get fully out of it!

I am of to hosp in a week or so again so I will get tested for B12 and Iron and see if that's contributing to it but i am terrified of becoming "that person" who blames everything on their illness...

so complex!!

Thank you for the support - I will make sure I write again when I am happy!

Tx xx


Have you had your thryoid checked out - it is so insidious how that comes on and common with us lot, it makes you feel very low in spirits, tired etc etc.. I have this a well now! half my zing had disappeared before I realized! x


I'll definitely ask - could I blame any weight gain on that!? haha



I saw the professor the other day, mine did not show up on the NHS.. but I had every symptom, it showed up privately with bells on... a large percentage of those with hughes have it. All autoimmune conditions can end up involving the thryoid xxx


Felt very similar last weekend. Everything got on top of me and ended up posting blog on here and the kind words and the fact someone responded to me even tho they dont know me really really helped me. I deceided to deal with one problem at a time health first (new consultant) personal life or lack of it and financial problems can be dealt with when I feel stronger. You do seem to have an awful lot to deal with at once just make sure you put yourself first and if things can be put off for a while do so.

Hope things start to improve for you soon.

take care

sharon xx


Thanks Sharon

Good to know we're not alone, even althought I wouldn't wish this on anyone!



Hi tasch

So sorry to hear you feeling low hon. I understand the need for a break, just a day now and again, it p####s me off that there isn't a way to escape our symptoms.

As others have said you've survived so much and are a very tough lady, have you told doctor you're feeling so low? Although I'm not surprised with so much going on in your life.

Sorry about losing your puppy, it hurts and I don't think it ever goes away.s

Glad you have a hospital appointment coming up, maybe share this with them, see if they can help.

Good news about the new man in your life, he sounds great. I hope you can get settled again, so much upheaval not good even for our resident daredevil.

Sending big but gentle hugs n lots of love, Sheena xxxxx :-) :-) :-)


Hi Sheena

thanks for your kind words - don't worry I will be back up and running soon - I have had a distinct lack of adrenalin recently, perhaps that's what I need...!? Once this weird dust settles I will kick up some of my own and have some fun doing it!!

Tx xxx


You know what I'd like to do Tasch......give you a really big HUG!!! I think everyone has said everything there is to be said and I echo it all but sometimes you don't want words you just want a big Hug and somebody to listen so that you can off load. Well you can, and you have I hope done that, and Im sending you all the hugs too.

You know what, your new man might just surprise you if you tried talking to him.........

Try not to bottle up for too long next time and come and off load on here again. We are always around to give you that support you will need and can't get from others that perhaps won't understand.



You make sure you get that well deserved break I spoke of earlier....even a trip to see our Mary would do you good! :)

Its a strange thing this Hughes...I get it too where I can fight the world & its brother one day...then the next it'll be.....ok I give in, sod it all! - for no apparent reason!

Dont beat yourself so much with it hun, youre a strong gall you'll be fighting back in no time :)

Hugs....Sue xx


and on the subject of lack of adrenalin... without making you nod off with my replies zzzzzzzzzzzz etc. my tests revealed stressed adrenals, which went with the low thyroid function! xxx


Hi Tasch, u r so incredibly strong with all that u have been thru u have earned the right to rant, feel down, and wish u could take a break from this illness. But I wonder if u have ever had any counselling. I was lucky enough to get 6 sessions with a counsellor to help me adjust to all the changes my conditions have brought to my life. It really helped me + gave me some strategies for dealing with things when I feel like I can't take any more.

Bless u + I hope your new relationship is all u wish for

Love Sharon x


Hope you feel better soon...understand about the puppy....I have 2 dogs I adore....always adopt older puppies who have lost their human....

I would recommend a medical/mental health support group for folks w/ chronic illness.....In the US we can usually find them thru a large is very healing to be with people who understand your condition....writing on this site is helpful....but does not take the place of a live group.

best wishes



everyone has said what i was going to soooooooo all i will say is we are here for you1!!



Tasch, I read your blog on the day you posted it but was not strong enough to reply with a positive message as, although my circumstances are different, I am feeling the same. I normally plaster on a smile and "pretend" that everything is okay but my positive mental attitude is just non existent at the moment. I did promise myself that I would post a message of support when I felt strong enough. I do hope things get better for you, they say that which doesn't kill you makes you stronger then you, like me and a lot of others on this forum, must be hard as nails!!! Thinking of you x x


Hi Tasch

Only just joined the 'blogging' fraternity so apologies.

I was interested to read that you were injecting yourself with Clexane. I am pretty sure that Clexane would only give you a maximum INR equivalent of no more than 2.5; what is your prescribed range and if less than 3, are you sure that this is correct as, for exemple, my prescibed range is 3-4 (on Warfarin). Best wishes, Paul


You can't measure your INR when on a low weight molecular heparin as it will return to the normal range of around 1.0 as Clexane works completely differently to warfarin so you cant compare.

I use Fragmin at a dose of 10,000iu 0.4ml once a day injections but I dont have to worry about INR's!!

Welcome to the blogging world, its nice to have you and look forward to seeing you on here more often.


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