Today marks one year since my diagnosis

Today is a weird day. One one hand today there is only 3 months until I marry my partner. A partner who is my rock and support and who, for some reason, doesn’t seem scared off by the fact that I am batteling all these physical and psychological issues.

But the other thing today marks is the one year anniversary since I was officially diagnosed with Hypermobility Spectrum Disorder (HSD), which has since then been changed to hEDS (hypermobile Ehlers-Danlos Syndrome), which is pretty much the same thing only it has the criteria that there should be others in the family also meeting the criteria. They are trying to make the criteria tighter in order to find a gene/gene group so diagnosis will be easier, but as of now getting diagnosed is just a matter of actually finding a doctor who knows about the disorder.

But yeah, one year. One year since I was told that the pain, aches, dislocations, inflammations, weakness and fatigue I felt constantly was not just because I was going through a bad time, but that it was something I have to battle and deal with for the rest of my life. And since then my body decided to have a complete meltdown with more subluxations, inflammations and generalised pain in the past year than I have ever had before. I have had to make changes in my career (I am now part-time in my PhD), my living arrangements (I now live in my home country) and in my social life (pretty much a hermit by now). I have had to deal with the fact that if I don’t get to a point where I can keep my muscles strong I could end up in a wheel chair. It has been the worst year of my life.

I have already described my progress of being both relieved and extremely scared by finally getting my diagnosis in another post, so there is no need to describe that again. But the state of my life right now is: off sick from uni, in constant pain, saw 5 different doctors yesterday to follow up on my shoulder, leg, womb, and general pregnancy planning things. Got another appointment today.

My depression is back. Again I don’t know when it started, but there has been a lot of huge changes in my life recently and I simply haven’t been able to manage. Everyone else says that I shouldn’t feel bad, just doing one of those things (move country, plan a wedding, etc) is enough to make most people struggle and then adding a chronic pain disorder on top of it, well, that is just a bad combination.

When I saw my pain doctor yesterday, the first thing he did was to hug me. Look at my meds, tell me to start taking my meds for depression again and tell me to relax and just get my nervous system back to normal before we even start any rehabilitation. My physio said the same. My exercises consist of breathing. Or, you know. Conscious breathing. Anything else would set me off.

I am not sure that it is just all the big changes in my life that has caused this downward spiral. I think the fact that this day, the one year anniversary, has been on my mind for the past month at least. I think that has affected me. I have been aware of it, prepared posts about it and I have started being more… vocal… about it. I want to be more vocal. I want people to know about the disease. I want people to know that there are so many psychological aspects that go along with it, that quality of life is just so much lower than the unaffected. Living in chronic pain and fatigue… just isn’t.. ideal. No, it sucks balls.

I worry about how it is affecting the people around my. I know my partner is worried. And I know he is struggling. And I want to be there for him, but most days I just don’t have the energy. Which makes me feel worse and then makes him feel worse because he gets more worried and anxious. Kinda a vicious spiral. And I need it to be broken. And so does he.

I know this post reads different from my other posts, it doesn’t feel as open and honest, but I think it is because I am distancing myself a little bit. I’m not describing my feelings as much as some of my previous posts, not because I don’t want to, but right now, I’m just kinda numb. I feel clinical. Like my brain (when it isn’t fogged up by meds) just kinda goes ‘okay, so you feel this pain, this pain, this fatigue, this limitation, this makes you sad, etc. But to be honest, I’ve pretty much spent the last month crying. And the last few days sobbing uncontrollably. At least until I started taking the antidepressants again. I know they aren’t actually working yet, it takes a couple of weeks, but the decision to take them and to cut down on everything has helped me. Made me feel like I have a little bit of control. And then seeing a bunch of doctors, getting some steroid injections and stuff like that, knowing that one of my main pain areas will get better with the injection. Well, that helps as well.

Another thing that has helped is finding a way to tackle one of my main fears about my disease (disorder, whatever – chronic shitty body). I am so scared about motherhood. I know the pregnancy will be tough (though actually hearing from a specialist yesterday that all of my medications can be taken during pregnancy, only I may feel more pain in the areas I usually feel pain due to all the hormones that their effect on my hypermobility was such a relief). I will probably be sick (my whole family are so affected by morning sickness that they are unable to do much the first part of pregnancy, my mum was even hospitalised) and I will probably be put on bedrest if the ligaments in my hips and pelvis goes lose (very common in hEDS) and having a normal delivery was suggested to be avoided as I will probably end up pushing past the limits of my body, so a C-section was recommended. I am not actually pregnant, but it is good to be prepared before anything happens.

I am worried about being a mother though. I know I would be a wonderful mother and my partner would be such a devoted dad. But how do I explain my disease to a child. How do I explain that I am in pain, or tired or.. yeah.. like, I can barely explain to adults everything that’s going on with my body. And I am already angry at my body that I won’t be able to be the kind of mother I want to be. But I am determined to become better. Stronger. Healthier. It is a good motivator.

My biggest fear, however, is that I will pass it on to my child (if I get to have one). It’s genetic so there is a pretty big chance, especially if it is a girl. I don’t think I would be able to bear seeing my child in the kind of pain I am in. It would literally break my heart with guilt.

But these are the kinds of thoughts and worries I should try and avoid. Easier said than done, they are literally on my mind every second of every day. But they aren’t helping, there is nothing I can do, other than decide not to have a child that is genetically mine, which I genuinely consider as well. And there is a chance that my child won’t get it. That it won’t be symptomatic if it does get it. I was (mostly) fine until I hit puberty, so why shouldn’t they be. I don’t know.

Man, this became quite a mess of a post. But year. Thank you for reading. Stay strong. You are not alone.

– N

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