Before I was ill and when my kids were younger, spending a whole day in bed would’ve been a luxury.
Today I can’t get out of bed because pain and exhaustion are not gonna let me. It’s not a luxury when it’s not a choice.
My fibromyalgia symptoms had already been flaring up this week. Then we went to a beautiful family wedding yesterday afternoon.
I actually did very little physically, but it still pushed my body a bit too far. I think you’ve got to sometimes, to feel alive and to take part.
Most of the time life is a very careful balance of trying to pace myself. Often the choice is out of my hands anyway and I just have to rest. But now and then I choose to do something which I know is going to have physical consequences on my body – otherwise I’d never do anything! I certainly wouldn’t have wanted to miss the wedding, so that part was a choice. It was so lovely seeing two people in love taking their vows. Also, the food was delicious!
As I lie in bed now at 1 in the afternoon trying to slowly find my words through the brain fog and vibration of pain in my body I am realizing once again, all the things people living with chronic pain have to think about or deal with. As so many people are trying to function in today’s society whilst living with chronic pain I decided to write down a few things spoonies have to take into account to attend a family celebration. I hope you might share this and raise awareness.
I do this as much as possible the day before an event. Crucial.
2. Getting Ready
Fellow spoonies will know that just simply having a wash can be enough for one day sometimes. I knew it would take me a while to get ready. My husband helped me bath, he washed my hair for me. Then I rested. I put make up on. Then I rested. I did a quick hairstyle. Had a sit down. Then I brushed my teeth and by that time I felt ready for bed!
Then finding something smart enough to wear but comfortable enough to spend hours in. Flat shoes, soft fabrics, nothing tight. Sounds like pajamas and slippers right?
My husband pushed me in my wheelchair from the car to the venue, it has roadside parking only. The pavements are old rickety and bumpy and not wheelchair friendly so I felt every bump on the way in which made me sore. It’s something I wouldn’t have noticed when walking before my illness. Now I’m always looking ahead for the smoothest path.
I also used the wheelchair where possible in the building.
It’s a beautiful venue, we had our own wedding there, but it’s a listed building and so no lifts/elevators means using stairs. Stairs are costly.
4. Sensory Overload
A wedding is very much sensory overload and I know I should’ve taken more quiet breaks away from the chatter, music, lights, smells and temperature changes. But I so wanted to join in and thought if I can’t dance I’m at least going to be here. I met a lot of new people too which was overwhelming but I did my best to hide that.
Too much sensory stimulus leaves me feeling foggy and I tend to either overcompensate or go silent and withdrawn. As this was my first time meeting some of my husband’s extended family I wanted to make a good impression and so I probably talked too much foggy nonsense trying to cover up how I really felt. I didn’t want to be withdrawn and appear rude, lazy or aloof. I’m fascinated by people and their stories. I am naturally quite sociable but I get drained very quickly these days so don’t socialize much.
Of course we all dress up for weddings! I found myself feeling anxious that with makeup and hair done my illness is even more invisible and so that horrible feeling of not being believed tries to creep in. Will people think I’m faking?
The flip side being that as I felt myself increasingly tiring and struggling I also worried whether I looked a state. Can’t win with fibro anxiety!
Leaving early to go home to rest all sounds well and good, but when I got home I was so overstimulated and my adrenaline so high that even though I was totally exhausted, I was awake until 5 a.m. By 2 a.m. I was teary and anxious from the pain in my body and the panic that I couldn’t switch off.
Was it worth it? Yes! It cost me a lot of spoons – definitely more than a days worth – but I love weddings.
So, today is a recovery day and that’s OK. Tomorrow probably is too. Possibly the week, you never know with this illness.
But I’m looking forward to the day when I ache from dancing the night away instead of being in pain from just sitting, chatting and doing minimal walking. That day is coming in God’s timing. In the meantime today I’m grateful for my family and for my bed.
Please don’t feel sorry for me. It really was a beautiful day. I’m very glad I went and it’s a privilege to be invited to share in such a special occasion. I just also think it’s extremely important to talk about the realities of the cost to help spread awareness.