Acceptance Isn't Easy

I have been going through a phase in my life lately where I’ve been reflecting back, and it really hit me just how much I’ve had to accept everything that I can no longer do with lupus. I’m not going to lie when I say it makes me feel sad.

Don’t get me wrong, I’m the type of person who always tries to look on the bright side, and when I’m feeling low emotionally, I tend to pick myself up fairly quickly. But I suppose you could say it’s extremely difficult not to feel sad sometimes, especially when we have to live in a world where we feel very different from those around us.

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Different because of lupus

One reminder for me was when I was taking my daughter trick-or-treating. We were going with friends, and she was so excited, but I wasn’t feeling my best, although I figured I’d push through it because I felt bad for her if we didn’t go. I didn’t want to disappoint her, especially as it was her first time!

When we arrived at our group of friends, the weather was horrible, and I assumed we’d just knock on a few doors. However, we ended up walking a long way. I was really struggling, feeling in pain and getting breathless, but I kept going. Trying to keep up the façade that all was well and dandy, but the next day I felt horrendous.

It brought back a lot of old feelings about how I’m different because I have lupus and how whenever I meet new people and make new friends, I have to go through the same issue of explaining how I can’t keep up and energy is limited. In that situation, I probably pushed myself more than I usually would because I didn’t want to feel like I’d let my daughter down.

Lupus parent guilt

One issue I struggle massively with is the guilt when it comes to my daughter and how I want her to have a ‘normal’ mum who can do lots of fun stuff with her. Although it’s not always possible, I try my best, which she understands.

I have found great support for this has been meeting another mum who also has a chronic illness and our daughters have become friends. We have bonded over our health issues and we always encourage each other that we are doing our best for our girls, and to not feel so guilty if we need to say ‘no’ sometimes or if we need to rest.

Avoiding physical activity

Some of the other issues I’ve struggled with in terms of acceptance are that I cannot exercise due to the added complication of POTS (Postural Tachycardia Syndrome). If I try to do just a small amount of exercise, it seems to put me in a flare-up, and my lupus becomes worse. I get a racing heart, palpitations and a feeling of weakness in my muscles.

Once again, I used to love exercising, and I can’t help but feel envious when I see people enjoying going to the gym or for a swim. It’s also meant that losing weight is especially difficult now that I’m getting older.

I also find sex incredibly painful due to bladder problems that are connected to my lupus; therefore, I’ve learned that it's probably best avoided, which I’ve had to learn to live with.

Enduring change with lupus

Finally, not being able to work is another issue that I’ve had to accept. I would absolutely love to go back to working in the travel industry or to have even retrained as a nurse. I suppose I have had to endure a lot of changes in my life that have taken my choices away from me, which I know my fellow lupus warriors can relate to.

I just have to remind myself that I’m doing my best with the cards that I’ve been dealt in life and that I’m lucky to have an opportunity where I can share my experiences with others so they don’t feel so alone.

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