A letter to my Ankylosing Spondylitis

Dear Ankyosing Spondylitis,

Over the last few days, I have been angry, I have been inwardly upset, most of all, I have felt betrayed. I still don’t fully understand what is going on; I don’t understand the science or the biology. We have had years of ups and downs, most recently, you have left me feeling so unbelievably tired and sore, I know now that there is something going on and that you are in my life for good, I just don’t understand how this has happened.

I have been reading, I have now become a member of National Ankylosing Spondylitis Society (NASS) and it has all been so incredibly helpful, but as I read other’s stories and see those who have also been living with you -some for far longer than me – but despite reading similar experiences, I just don’t see myself as having the same thing as all these people.

The comments I receive on my blog and my Instagram, have been so incredible. I share our story with others as a way of getting to grips with what we are going through and reach out to others who may help us… but there is no ‘cure’. I am the same as all these other people. This isn’t going away and this week I am so cross with you.

We have spent the last few days gardening, I could feel myself getting tired and my body getting sore, but I just carried on. “I’m fine”, I told myself and I kept on. My body is now feeling stiff and sore. My shoulders feel heavy, my knees ache and my sciatica is jabbing; I should have stopped, but we were having so much fun, potting plants with the little one. She is so full of beans and she was having the best time with her mummy and both throwing ourselves into the physical work. When we stopped, I just wanted to curl up, but I knew if I did, I would never get back up, so I continued all day… I haven’t stopped and I know I will pay for this.

Tomorrow, is the weekend, the OH is at work and the little one isn’t at preschool, she is with me all day, which means very few breaks. On top of all of this, she hasn’t been sleeping at all well recently, so I am getting very little rest, but surely I shouldn’t need to be having so many breaks and stopping; I am 33 for goodness sake. I have a young family and an outdoor life. Why doesn’t my body just work the way other 33 year olds bodys do?

I can’t sleep at night with all the different thoughts running through my mind. I tell myself that the medications that the rheumatologists want me to try will work and that will be enough, but as I empty trays of pills into my pill box, I feel annoyed that I even have to do that. The methotrexate makes me feel ill for days, so now on top of the fatigue and pain, I have constant nausea. I seem to have just added to the symptoms, just trying something so that all the relevant hoops have been jumped through and I can progress onto the anti-TNFs that the rheumatologist tells me I will eventually be prescribed.

I tell myself that these are normal emotions, that this is part of the acceptance, but that in itself makes me so sad. So many plans are on hold, so many things that I now need to factor into my life, you are here for good and I don’t want you.

I am so tired of listening to people tell me to take supplements “surely some vitamins will get you sorted” I was told this week, as if I had ‘given up’… Don’t they think I have tried that? I KNOW they are trying to help, I really do, but I am not doing this to myself, I am a healthy woman; I eat well, exercise, I even take supplements already, this is a part of my genetic make up, this isn’t going to go away and I haven’t ‘given up’ when I tell you that I have tried most things… the fact I am continuing to work on this, should demonstrate that I haven’t given up.

I know I will get through this anger. I know I probably shouldn’t even post this, as I am sure people will tell me I am being negative, but this is how I am feeling this week. I am sure next week will be better, but for now, I have to go through these emotions as this is still only the beginning of my journey with you.

Yours… always,

Jessica.