Amazing Partners and it's not all bad... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,330 members10,524 posts

Amazing Partners and it's not all bad :-)

MASuk10 profile image
4 Replies

Hi there,

It's been a while since I was on here last but just wanted to say it means so much to have an understanding wife/husband/ partner.

Many times over the last couple of years, my rock Miranda, has put up with my foibles due to APS and I wanted to give a shout out to all those partners that are there for their lesser halves.

You're all stars!!

I'm lucky at the mo. I currently take 6-7mg of warfarin and although I had multiple p.e.s on both upper and lower lobes of both lungs and diagnosed with Primary APS, I'm able too pretty much carry on as normal. I work 7.30 to 5.50 as a joinery manager working both on the shop floor and in the office. I still play sports, badminton and low contact football and often at weekends diy-ing so it's not all doom and gloom. I still get occasional headaches, aching and painfull hips/joints and every now and then fatigue washes over me.

Having a strong mind and especially a strong partner is a great thing to have :-)

See you all at the patients day on the 18th May!

Written by
MASuk10 profile image
MASuk10
To view profiles and participate in discussions please or .
Read more about...
4 Replies
ClaireDibb profile image
ClaireDibb

Thanks for this post - I agree, my husband is a star too. May I ask what the patients day on 18th May is?

MASuk10 profile image
MASuk10 in reply to ClaireDibb

Hiya,

Are you aware of Hughes Syndrome Charity? They have a patients day at St Thomas hospital in London and Mr Hughes himself is there too.

Details can be found here hughes-syndrome.org/get-inv...

It's an afternoon with talks about the latest findings/ treatments on APS.

Tickets can be bought on the link above :-)

MaryF profile image
MaryFAdministrator

Good for you, I am married to a superstar also! MaryF

Debbweb01 profile image
Debbweb01

I'm so glad u have strong mind, as I usually do too! As far as my Oerter goes, he was just DX'd with ALZHEIMERS! I lost my leg to CAPS/Catastrophic APS! I have no leg, no help! Recently my sister has been my one and only support and of course this blog! Mary and Kerstin and all the administrators have been awesome on here! The people who have it r the real Heros and I thank them all for their unwavering support!

You may also like...

Partner doesnt seem bothered

All these things at once!

Wracked w pain all over at least once a month

and I feel pain all over. It almost feels like flu symptoms. I'm on plaquenil n warfarin. I was...

Maybe not APS after all

thank you to all that have given me such amazing support. Update to follow you will all know when...

Been feeling really bad for a long time.

down. I have All 3 of the APS blood disorders plus 3 additional and one DNA mutation all causing...