Today marks day number 12 of knowing what is wrong with me. Hypermobility Spectrum Disorder, HSD, hypermobility syndrome – lots of names for whatever it is. Basically it means that I am at the extreme of hypermobility so that it isn’t just the ligaments in my joints that are loose, but all the ligaments in my body affecting literally anything which has to do with muscle.
For the people who has read my first post you know that I was always ill as a child/teenager. This is why. It affects my gut, giving me cramps, it affects my stomach giving my extreme heartburn and nausea, it affects my brain giving me constant headaches and migraines. It affects my reproductive system giving me extreme pain at that time of the month and making carrying a child during pregnancy more difficult. It affects my heart and eyes. It affects my proprioception, meaning that I walk into things, bang my body on furniture because I just don’t know where my body is in space. It also means that when I do, I am more likely to bruise, sprain and fracture even though the impact is barely noticeable*.
It affects literally every muscle in my body making them work harder to do their job of keeping me upright and stable – so it makes me tired. And all of the above means that I am in pain nearly all the time. It is also highly associated with anxiety and depression.. like.. obviously.
Being diagnosed was weird though. My physio had flagged it when she went through my medical history and said she would check with my doctors (I have a handful I see on a regular basis) but that I should not start googling until we heard back. Next time I saw my doctor it was confirmed.
For the first 24 hours I didn’t tell anyone, not even my partner who I live with. I completely ignored it until next morning when I started googling details. Bad idea! I had known that it was related to my head- and tummy aches but looking through the sites I realised it was more. So I told my partner. In a facebook message. While he was at work. I literally wrote ‘btw remember when my physio suggested that I have that syndrome, turns out she was right. Here is some information.’. There were a few questions about treatment but other than that we just texted about normal everyday stuff until he came home from work late. So I think he was surprised that I was crying as much as I was when he came home. I hadn’t made a big deal of it. I didn’t want to burden him with it at work. That night he tucked me into bed weary from crying with the knitted bunny toy I have had since I was a baby.
The next 48 hours I spent in a weird state. Again being diagnosed was weird. On one hand I was devastated by knowing that I have a chronic illness which is going to affect all aspects of my life and I will probably always be on a bunch of different medications, particularly to manage mood and pain. On the other hand I was relieved. That I finally know why. Being told that I am not a hypochondriac or that everything just seems to be wrong with me. That I am not just clumsy or need to eat some calcium. But that there is one thing which explains everything. And then I went back to being sad because I will never be able to live a normal life. I will never have the same energy levels as other people and pain will always be there.
Then the anxiety set in. Will I be able to complete my PhD in time? Will I be able to survive the workload? When I finish will I be able to work full time? And perhaps the most anxiety provoking worry is about motherhood. How will it be coming off my medications for pregnancy? Will I be able to be a good parent if I am always in pain and fatigued?
Then I tried to look at it objectively. In reality nothing has changed. The symptoms I’ve had for years before my diagnosis are the same as I have now. I have led a somewhat normal life all this time (being a student isn’t really a normal routine), though pain, fatigue, anxiety and depression will always have an impact on your life. The only thing that changed with the diagnosis is the knowledge that it won’t go away. That it is not a matter of just getting over the most recent injury and do the rehabilitation and then be back to normal. It is not just a matter of getting used to move about again and get back into shape. It is not just a matter of getting used to having a normal routine (9-5 work) again.
The only thing that has changed is knowing that it is permanent. That whenever I get incredibly tired from nothing special I get sad and frustrated because it will always be like that. That whenever I get in pain from normal stuff like sitting at a desk for an hour or so or worse, sitting in a lecture/seminar/symposium I cry of frustration because that pain will always be there. And apparently I am now a 27 year old girl (woman?) who sleeps with my childhood bunny toy.
* I once fractured my ankle because a toddler ran into me with a bicycle and last time I sprained my ankle (looking so bad that my very talented orthopaedic surgeon said ‘I’ll be honest with you I have never seen anything like that’) I didn’t even remember hurting it that bad. I just hit it against the corner of the bed or something like that.