First Event Going Out With AxSpa

It has been 2 and a half years of being on sick leave. I got lucky in a way, as my diagnosis happened right before the pandemic. As Covid came along with restrictions, it made it  easier not to worry about how I will attend events, gatherings or any outings. During this time, it was much easier not to worry of anyone’s opinions of me not being able to attend, or cancelling last minute or even making an excuse how I can’t attend, because it was all still new to me. I didn't feel ready to handle the effects of going somewhere and the aftermath that came with it.

For the context of this story: I am from Canada, in the city of Montreal, and in the month of August and we are now allowed to have some events after lockdown. I got a chance to go to my nephew’s baptism for the first time after my diagnosis. Let me tell you the emotions I had with just one event that alone tired me out completely.

I wish people around me understood

I had family tell me just come and sit for 30 minutes and leave. I had family tell me you have to come, it’s impolite to miss it. The pressure that comes from your surroundings is hard. As I have said before, if they don’t go through it, they will never understand.

I had to prepare in advance, from days before

I didn’t do much cooking the whole week. I tried to do my housework in advance, that way I can get as much rest as possible. I was praying that I won’t have the waves of exhaustion come along. All week long, I had to make sure not to miss out on my pain medication and follow my everyday routine. It was hard already, as I forgot to mention I am also a wife and a mom to 3 kids. You know how that goes.

The day before the event, I made an appointment at the hairdressers to get my hair done, thinking it would make it easier for the day of the event. One less thing to worry about. But that also took so much energy from me. To wake up, to drive there, to sit there for a long period of time, as I can’t sit for long. Let’s not forget the drive back home. Usually, my husband drives me, but he wasn’t feeling well, so I had no choice.

My spoons were gone

Getting home from the hairdresser, I was already done with my spoons for the day. I forgot to mention, I just started a new biologic Cosentyx and am in the process of loading doses, which means I had to take my second injection. Yes, the day before the baptism. I know everyone is different with medication, but up to now, I don’t react well. After my injection, I felt so tired, weak, and had increased pain that kept me up all night.

The morning of the baptism, I stayed in bed, as much as I could. I took my pain medication and vitamins. I took my warm shower and started to get ready. I had to choose between the church or the restaurant. I chose the restaurant, as it was a later time, which gave me more time to rest. I wasn’t able to attend both and I am so happy on my decision.

It’s taken me 3 days to feel a little better, as I was put into a flare. This is what it means on having a chronic illness. You can’t predict what or how things will go. You can do everything, like follow a routine, make a plan, take your medication and still not feel well. It’s unpredictable. I wish people understood more that it’s not that easy. It takes more effort and energy than the regular person.

No one can see the pain

What makes it harder is being at the event, sitting down, and being in so much pain inside of you that no one can see. You just want to scream. What makes it harder is knowing that it’s only been 30 minutes that you are sitting, uncomfortable, and you already can’t do it anymore, but have no choice and realize the food hasn’t been served.

What makes it harder is, no one even asks if you are fine. It’s like I am wearing a mask, behind it all. What makes it harder, is leaving the event, going home and the after-effects. Everyone goes on with their lives, while you try to figure out what you did wrong that put you in a flare. Once again left alone to figure it all out. No one to call and ask how are you feeling.

I was happy to see everyone, after so long. I was thankful that I was able to do all this and got to see where I can push myself. I was proud of myself for taking the courage and taking myself to another level, even though I was put in a flare. I am proud of myself. Because at the end of the day, I am learning every day new ways to get through this. I know it’s not easy. It is so hard. It is a lot of ups and downs. It’s all about little baby steps. When I look where I was 3 years ago and now, I know I have come a long way.