Anxious wife

My husband was diagnosed with SLE in May. He was extremely ill in hospital and thought I was going to lose him. Things have improved a lot since and we are both coming to terms with the diagnosis. I have been extremely worried about him but have to try and keep this under wraps to avoid him getting stressed about every small thing. Tomorrow he is seeing his rheumatology consultant again - it has now been reduced to every two months - but next week seeing a dermatologist and in Jan the dental medicine team. It just seems like such a roller coaster ride! Coping and helping to support him with the physical and mental symptoms and trying to control my own anxiety. Have been following this forum for a while and wondering if there are other wives/husbands - it's so tough sometimes 😢

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  • Hang in there - he is really lucky to have such a supportive partner. Hopefully things will improve as the treatment gets properly underway and the hospital stay will become a distant memory as you both return to a more normal life again. These diseases are life changing but sharing the worries and the load with a good partner on board is half the battle won hopefully. It's the ignorance we encounter on our way, sometimes from our other halves , that can drag us into the abyss. I'm very lucky to have a supportive husband myself and I know it makes a huge difference!

  • Hi loopy wife

    Sorry to read you and your husband have had such a tough time thanks to lupus!. Hopefully now with the right diagnosis and treatment your husband's health will improve even more. What is hard is the myriad of different consultant appointments we can collect and have to go thru. I hope your husband's go well!. I've coined a phrase for it 'have to be fit to be ill' . It can be very tiring and stressful if there are too many!.

    Your husband is very lucky to have you as such a support. Stick with the forum as it's so helpful and non isolating. You could also ask Paul Howard if there is a local lupus group in your area where you'd meet other partners and sufferers. They hold regular coffee and chats which can be good. You could also ask on forum if there are other partners like you who worry and would like to be in touch?.

    Hope that's helped and keep us posted as to your husband's progress. X

  • Am so glad you're here and have posted, loopywife.

    Twitchy's & misty's replies are so wonderful that there isn't much I can add

    Except, I guess, to say that I'm hugely relating to your post because my husband has early onset Crohn's disease, which is another incurable autoimmune condition that can affect patients in many ways (perhaps you know that crohns can affect everything from the lips to the other end 😉, which impacts on other body systems because probs with the digestive tract start trouble for the rest of the body).

    We've been married over 30 years now...through all sorts of rollercoaster rides: relatively gentle rides & not so gentle rides 😏. Like your husband, mine has been an extremely ill inpatient...and seen great improvements thanks to individualised treatment. All the while my job has been to keep calm & carry on while avoiding & preventing any stresses falling on him as best I can (not easy, as all the while I was living with unrecognised SLE). You're right: this is v tough for us wives, partners...and for anyone who is vvvv close to a patient. And the companionship + understanding of wonderful forums like ours can make all the diff!

    The good news is that, to our utter surprise, my husband's crohns went into remission about 10 years ago in his 50s. He is now off immunosuppressants and only on the daily meds he needs to manage chronic issues due to several major bowel resections. He is so well that in retirement he has been able to solo plant a native wood with 20,000 trees...and now he spends most of his time tending it. This feels miraculous to us 🤗...and we're making the most of every day

    So, take care of yourself, loopywife....do your best to stay well as poss...and try to be as open minded as you can: more is understood about immune dysfunction conditions every day...treatments are improving...awareness is increasing. Taking things the proverbial 1 step @ a time is THE way to go 😉

    🍀🍀🍀🍀 coco

  • Hi there,

    Thank you for sharing your story with us. It is great that your husband has such a supportive partner and that you are both in this ‘journey’ together.

    We have some information on caring for someone with lupus which you might find useful that can be downloaded or requested on our website here lupusuk.org.uk/wp-content/u...

    We also have several support groups across the UK where you can chat to people who are experiencing the same issues. The groups are useful for people with the condition but also for their families and carers. You can find your local group here lupusuk.org.uk/regional-gro...

  • Thanks everyone for your replies. Every day feels different and just have to keep riding it out. The consultant visit went well but it was the few small niggles that upset him. He is usually amazingly positive. The same evening we went to a cat shelter and rescued two cats which seems to have done wonders for us both - great distraction! Will keep following and great to have a place to express worries :-)

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