Last Sunday, J got another random bleed in an unfortunate location: his iliopsoas muscle group.
It started out as a mere “lump” on his hip area, which he didn’t think much of at first, since bruises with some swelling are quite common among people with hemophilia. Only when it began to progress in terms of pain and scope did he start to think it was another bleeding episode.He had just recovered from a bleeding episode in the same site last month. In my thoughts, a month’s interval between iliopsoas bleeds was way too short.
According to J, iliopsoas bleeds are one of the worst kinds of bleeds a person with hemophilia could possibly experience. The iliopsoas muscle group is a large muscle group spanning from back to buttock to groin. Injury to this muscle group may be life-threatening for a person with a bleeding disorder.
So what happens exactly when J gets literally knocked down by this unfortunate bleed?
1. He’s bedridden.
Ilopsoas bleeds are extremely painful. Even after he’s had a factor transfusion to bring his blood clotting factors up artificially so that healing may commence, the injured site (butt and hip area) will continue to hurt until the internal wound heals completely. This means J will be in excruciating pain for a week or so. As a result, he’s often stressed due to the pain (and since he has epilepsy, he may also have stress-induced seizures). The only way he can manage is by staying in bed the entire time and taking painkillers which make him drowsy. (Having a comedy show playing in the background also helps.
2. I (C) hardly leave his side.
Call me a doting wife, but I just don’t want my husband to feel like he has to face his condition alone. I’ll be honest, it’s not easy to tend to his needs now that there are things he can’t do on his own for the meantime. Nor do I feel great about watching him scream and writhe in pain while I sit by his side and attempt to fix what can be fixed, e.g. his sitting position — but there’s really nothing more I can do besides that. As with all bleeds, all you can really do is wait for it to heal.If I’m not accompanying J and helping him with his needs, I’m watching over our baby Cittie while she plays in our bed. Since J can’t exactly reach out to get her if she gets too close to the edge or puts something nasty in her mouth, I have to be the one acting as “child police” and performing baby restraint when needed.
3. Work? What work?
As a result of everything I’ve described above, it’s just very difficult for us to get any sort of work done. I’m not usually able to concentrate if I take my work to bed — maybe it’s a quirk of mine. Also, J is in charge of photography for the store, and in this case he can’t shoot or edit from bed. In the first place, he can’t (and shouldn’t!) even move. I could take over, but I don’t have as much practice in that department… and let’s admit it. It’s hard to be in the proper mental state for doing any work when you know a loved one of yours is suffering.
That said, we are so sorry we can’t get anything done in this time of great pain and (physical) agony.