chronicillnesslife

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Lupus life struggles, I need some advice please!

I was finally diagnosed with Lupus Nephritis last year after many hurdles and struggles so I am FINALLY on the medications I need to help my kidneys improve, including prednisone but now I'm dealing with some side effects from prednisone that I find difficult to manage. if anyone has any suggestions at all for the problems below, I'd really appreciate any help at all!!!

I love to do my make up and hair but my skin has become very greasy and sensitive so I struggle to use foundation of any kind and it never lasts!

My hair is very hard to manage due to being extremely greasy no matter how much I wash it or the products I use. I'm also missing all the hair on the top of my head.

I usually like to dress nice when I have the energy, but I have severe weight fluctuations and swelling, I don't always have the resources to go buy new clothes with every change. #Lupus #LupusNephritis #ChronicIllness #lupuslife #prednisonesideeffects #medicationsideeffects #chronicillnesslife #weightgain #physicalchange #adviseplease #adviseme #Advice

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When you feel like you and your health hold your loved ones back in life.

Every day we deal with a heap of grieve, shame and guilt.

We greatly appreciate our loved ones and partners. We truly do understand that our health isn't just hard for us to digest, process and accept but it is equally hard for them. They don't want to see their loved one in pain every day, struggling and going through treatment after treatment. It's emotionally heart breaking.

We feel like half the time we are a burden, as they press pause on their life to be there for us. This can be really hard on our self esteem and self worth as the guilt becomes overwhelming.

Yes we want support and are so thankful for all the support we have.

But we don't want our loved ones looking back with regret if they missed events, moments, adventures and opportunities to be there for us.

We want them to live as normal life as possible and enjoy life as they deserve too.

I know so many of our loved ones will tell us on a daily basis that our health is their top priority and they don't see it as a burden to them to look after, support and love us. This can sometimes make us feel guilty for feeling this way and questioning their support, but I think it's total natural to feel guilt and have that worry about their life in the back of our minds.

For me.. I've always said to friends and family LIVE, live double for me and you. Do everything you want to, can do and dream of doing.

Because it actually brings a smile to my face when I see them living and having fun. It weirdly gives me hope for life and that life can be beautiful and bring happiness along the journey.

Life really is rough and tough, it's not always kind and when you are battling a chronic or mental illness you do feel like you are living in a black hole! You can't see the end of the suffer or a light at the end of the tunnel. But it is SO important to keep hope in our hearts and have the love that we have around us to keep fighting but also love enables to see the glimmers of hope, it helps us feel a touch of happiness and love I truly do believe helps us break out of our comfort zones.

So what can we do to help relieve our guilt over our loved ones?

My advice would be to communicate.

Share how you are feeling in regards to the guilt about them not being able to live and you feeling like a burden.

But honest and open about you not wanting them to look back with regrets.

Air it all out and for sure they will gain a deeper understanding into where you are coming from and will be able to explain their side, which should but you at great ease.

But communication is really at the core.

Nobody ( although we would love to) can mind read.

As humans anyway we go through a range of emotions, thoughts and feelings minute by minute so that is why it's important to have regular chats and check in's.

The first chat you will have will always be the toughest but it does get easier as you build your confidence up and also feel more at ease. It can also help massively strengthen relationships too.

Have any of you felt guilt about your loved ones or partner not living out their life dreams because they are supporting you and your health journey?

#ChronicIllness #ChronicPain #LymeDisease #Relationships #MentalHealth #chronicillnesslife #Trauma #Communication #Support #healthsupport #chronicillnesssupport #spoonielife

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2020 be like that

#EhlersDanlosSyndrome Halloween is one of my favorite holidays and I can hardly get off the couch because if pain, tics, instability, and cramping. 2020 has the worst sense of humor, cruel irony. #chronicillnesslife #why2020

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