Hello.. my name is Amy and even though I do not have lupus, my husband was diagnosed last year and his disease seems to be progressing qiickly. There are days it crushes my heart to see what he goes through and how strong he is... I send prayers for you all suffering with lupus... Thank you for letting me join your community as I need all the insight I can get.

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  • Just signed on and I thought I would wish you and your husband well and hope you find some of the answers you are looking for here, there is a lot to take in and I am still getting my head around it. It is very helpful to share and there are some folks that have been living for lupis for quite some time and are kind and knowledgeable. ML

  • Hi Amy, firstly welcome to our group. I'm glad you've joined our group. Wish more friends & family would join or try to educate self about Lupus. Living with Lupus means we face many physical & mental challenges. After long periods of sickness what most people don't understand is the recovery is also a mental not just physical cos we suffer a sense of loss of not being able to do what we used to/enjoyed. Also Lupus affects each person in random different ways depending on lifestyle, diet etc. There are common symptoms that I pray that you will become aware of so you can support your hubby as sometimes when I'm starting to have a flare-up if my life busy sometimes I ignore the signs like massive weight loss, manic behaviour, then Im bed ridden for wks or even mths, Some people call them flare-ups, I call mine "physical meltdowns". Pls don't panic, listen to your husband & ask him what you can do to support him. If you make suggestions of trying new things but pls don't bombard him with too much 'Lupus info'. If he has certain symptoms, encourage to keep a diary of what he was doing, eating, feeling before flare-up so you can both look for patterns that may be triggered over time.He will adapt in his own time, hopefully thru earlier choice (healthy veg/fruit diet; no alcohol/smoking) & not cos his health has deteriorated. Lupus was dormant in my body for over 20yrs, I'd get the odd Arthritis symptom but due to the high stress in my life, Lupus became active & brought 9 other health conditions to have some mad party inside me. One thing I find frustrating is cos I have good skin & look healthy on outside, when I talk about why I've not been around due to illness, people don't believe I live with 10 health conditions or that any thing is wrong with me. I have to always remind them that my symptoms are from the inside (organs, etc) not the outside. Very odd! I'm a very straight talking honest person so I've come to the conclusion that people are blinded by their own ignorance & want to believe what they see. At times dealing with the lack of compassion fr people is more frustrating than living with Lupus. Your husbands lucky to have you try & learn about Lupus. Remember to empower him, not enslave him. We live with Lupus so we have to adapt as needed. Pls be patient with your husband as he'll be trying to get used to adapting with the symptoms. Lupus is a battle & may win sometimes but I will not give up my life, I will adapt. For decades I never took any meds but when the pain became longer & unbearable I started taking the meds. It took a while for my body/mind to adapt but the pain has gone so for that I give thanks. Popping pills is not ideal, I'm still looking out for herbal/natural remedies (Fr a child, my mum taught me about nutrition but I took it for granted).

    You may need support at times & if it becomes too frustrating, pls feel free to post your thoughts & feelings on this forum, we do.

    If you meet others with Lupus, if your husband gets too frustrated or overwhelmed, pls encourage him to join this group.

    Or you could setup a friends & family of Lupus group or your husband could join a local Lupus Support Group (or set one up).

    Lupus is believed by many to affect mainly Afri-Caribbean women but I've been a member of various Lupus Support Groups & seen it can affect any person of any age, race & gender.

    I find writing on this group therapeutic as it helps me reflect on my current self & what I've been thru. Also giving & receiving support on here is priceless. The loneliness I've felt thru illness has made me respect my boundaries, due to illness my tolerance levels have decreased big time, I've become mentally & physically strong (after battling the frustration & sadness), eat healthier (I'm gonna try veganism), yoga & Pilates (to build up my muscle & stamina loss fr illness) changed my lifestyle (I now do what I can when I can instead everything in one day). I'm still adapting to my new self with the hope of going back to work one day or being more active. At the moment, I can't do most of what I used to but I know I will learn other things. I'm now seeing it as a challenge & character building.

    Anyway I wish you & hubby the best. The road will be long & at times lonely but it's not just about the destination, it's about your journey...together.

    Peace, love & positive blessings to you x

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