An Amazing Week

By Ali Long

2 min read

I am always grateful for a good week. But there is always a sense of sadness that comes with it. A sadness that this is what I miss out on most of the time.

I inject myself every other Saturday with Cosentyx. I did my injection and had my regular hangover on Sunday. I woke up on Monday feeling great, even more than great. I decided that I was going to make the most of this. I pushed myself out of bed every day. I decided that this week I wasn’t going to allow my fears to take over.

Each morning I woke up, got out of bed, stretched, and had my breakfast. Then I walked 5K every day. I was so happy with myself I walked over 10,000 steps each day. I was even able to do a workout.

I felt so happy. I thought that if I continued to push myself out of bed, I could do this every day. I got into such a positive mindset and such a good mood. I really believed for one week that if I pushed myself, it really was a case of mind over matter and this illness wouldn’t dictate my life.

I was wrong

My pain and fatigue are back like a bang. Now I wake up and I can’t get out of bed until one of my family members does my hot water bottles for me. I need to get heat into my body, so I feel comfortable enough to move. I haven’t been able to go out for a walk as I feel like if I do, I will faint. For the past week, I’ve spent most of my time resting in bed.

After such a good week followed by this awful week, it has made me feel really sad. I wanted to feel like that forever. Of course, I still had pain and fatigue, but I was able to do so much. Some days I even went for two walks. I wish every week was like that. My illness and my life would be so much more manageable and ‘normal’ if that’s how I felt every week.

I keep a journal

Unfortunately, I can’t figure out why I felt so good and then why I felt so bad. Well, I presume I felt so bad because I pushed myself too much the week before. I can’t get the question of: what did I do to have such a good week? Out of my head. It was the best week I’ve had in two years. I just wish that I felt like that all the time. Or even for the majority of the time.

Today is injection day again. I really hope that I wake up on Monday feeling like I did two Mondays ago. If so, then I know the reason. If that is the case, I can talk to my consultant about it. Maybe I need to inject myself with Cosentyx on a weekly basis. I don’t even know if that’s possible. I am getting ahead of myself here.

I am going to continue to journal daily and continue to listen to my body.

I really hope for another amazing week soon.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Anna Samson Moderator & Contributor
I hear you! I call them "post-fun blues". I always know my symptoms will act up a bit and I'll feel sad about it, but it's just as hard every time. Hope journalling symptoms helps and you can find a way to have more good weeks
Lisa Marie Basile Moderator & Contributor
I am so happy you've had a good week, and I hope it continues too! It's elusive, though, the good feeling — it slips away without ever being noticed and comes it on out of nowhere, too. So bizarre. This resonates so much: "A sadness that this is what I miss out on most of the time." I know exactly what you mean. It's hard to reconcile that with just accepting that some days are great and others are just bad — and it is what it is.
Nicky Flikas Moderator
Hi my dear <inline-mention username="Ali Long" user-id="2106796"/>, Reading this sounds so familiar. I am sorry your week ended with pain and not feeling so well. I know the feeling that come to us when we start not feeling well again. All those thoughts you mentioned. If it is the biologic? If you need to inject maybe more often? I am on Cosentyx as well. I been on it now for about 9 months and I been getting the same thoughts when I start not to feel well. Maybe the biologic is not working anymore? I think what you are feeling is normal and at the same time can be so heart breaking. I am sending you warm hugs and hope your doing better. Wishing for another amazing week to come a long and be longer. Sending you the biggest hugs and lots of love your way, Nicky (Team Member)
maisi Member
My heart hurts for you...and shares in your experience.
1. maisi Member
 <inline-mention username="Nicky Flikas" user-id="2484107"/> Thanks. Father's Day is an exquisitely sad day for me.
2. Rebecca C Moderator & Contributor
 <inline-mention username="maisi" user-id="2108559"/> - This I understand. Holidays are not always joyful and full of celebrations. It can be a reminder of those gone too soon, or of a difficult history. I hope that you can find some peace and tranquility on this day, especially in the knowledge that you are safe and loved. Rebecca (comm advc)
James Hollens Moderator & Contributor
Hi <inline-mention username="Ali Long" user-id="2106796"/> , I am so sorry to hear that your amazing week came to an early and painful end. I have had similar experiences where I have randomly woke up feeling good and got carried away by this and overdid things and caused myself more pain. It's one of the most frustrating parts about having AS - we don't get good days all too often so want to make the most of them but sometimes doing this has painful consequences! I suppose we just need to try and workout the right balance. I hope that another amazing week comes around soon that you can enjoy for longer with less repercussions! Wishing you all the best, James (Community Member)