By: Sian Fiona Williams
Via- The Mighty
Anyone else with the same/similar condition knows that each day is different, but at the moment I am struggling quite a bit. The main issue I have is a lack of knowledge regarding what I can and can’t do. This isn’t just by friends and family but also myself. I do not know what my body is capable of and every day seems to be a struggle and dance to see what activities I am able to manage.
Last night I went to the cinema to see a film I had been waiting to see with my husband for weeks! I had been sat on my rocking chair all day perfectly happy, in pain but happy, so assumed the cinema would be fine. This was a mistake! Within 20 minutes I was in agonizing pain. I was hugging the chair in front of me trying to stretch, I was breathing heavily, I kept having to leave the movie to try and stretch myself out in the bathroom! It was heartbreaking but a realization that I am not able to do activities that most think are perfect for someone with pain and joint issues.
2. Eating dinner in a restaurant
You would think, well you can eat dinner at home so you must be OK to eat dinner out too. I found out Monday this was a mistake, too. My body was in so much pain, I was so warm and then cold, I was shaking and eating a lot to get through the pain. The only comfortable position was when my legs were up on the bench with me. At first I had my legs up on the bench with my jacket over the top of them because I knew it wasn’t appropriate to have my legs on the bench. When I felt too bad having my legs up I had them down and crossed, and this was when the heat came over me.
3. Putting on a sports bra
I normally wear sports bras because they are more comfortable. With the pain I can be in I try to be as comfortable as possible, so no wired bra/sports leggings/ anything that doesn’t dig in or cause unnecessary discomfort. Unfortunately lately tight T-shirts and sports bras have become my nemesis! I have to contort my arms and shoulders to get them on and have taken to having to sit down because of the pain and dizziness once I have put them on!
4. Making a cup of tea
Now this one I know from my support groups is an issue for quite a few people. I have always been OK until now though so I didn’t realize how debilitating it can be! I love my tea! I have a pot at least once a day and twice on my days off work. Unfortunately, lately I cannot lift the kettle properly or the teapot when it is filled. My hands shake, I feel weak, I feel emotional. In all honesty it is one of the easiest activities to a non-ill-person and I do feel a lot of jealousy when my husband pours drinks for me and looks at me like I am mad for not having the strength!
5. Drying my hair
People always compliment me because I have long thick hair, but lately it has not been a blessing! I wash my hair in the bath because when it is wet in the shower it feels so heavy I feel like my neck could give way. I stay in the bath until my hair is part dry and then I go into the bedroom, sit on the floor and spend what feels like hours drying my hair. My arms ache, my head is heavy and I just want to sleep, but if I don’t do it my hair goes uncontrollable which I cannot handle! This being said, the past two times I have dried my hair with my hairdryer I have had to have a nap and ended up half ruining my hair, leading to me pulling lots out lots of hair trying to comb it when it is so unruly!
6. Putting on shoes
This past week I have stopped wearing half my trainers and shoes. In all honesty I do not have the energy for tying shoes. It makes me dizzy, it makes me realize how useless my hands are becoming and really upsets me! It is upsetting that it takes me so long to try to wear shoes that I used to take for granted. When we are rushing out the house I feel guilty, when I get my shoes on before we need to leave and people feel I am rushing them, when really I just know that even putting on shoes I will probably need a rest!
There are so many other activities I have found difficult through this difficult time in my illness, but I wanted to share a few so people in the same position know they are not alone. We are strong!