Tuesday, 21 May 2019

GUEST POST by Sage for EDS/HSD Awareness Month 2019

My name is Sage and I was diagnosed with HSD (Hypermobility Spectrum Disorder) in 2017. Since then, I’ve developed over ten different symptoms and the pre-existing ones have gotten severely worse.

My current day to day life is a real struggle, my day starts from anywhere between 6am and 5pm. This is very unpredictable as it all depends how I felt the day before such as; if I did any strenuous exercise, if I slept well or decently that night or if I was up crying and screaming in pain all night. The latter has been my ‘usual’ for the past few weeks. 

My partner and I usually wake up together and he makes us breakfast. This had always been the case as my body would be too stiff to move when I first woke up or I would be too dizzy and getting up to do lots of standing would increase the risk of me fainting or injuring myself.  

After breakfast, I would either work on University assignments, as I am completing a Bachelor degree online, or relax in bed. Again, this all depends on the night and morning I’ve had. Everything I do is very dependent on those two factors. Something else that I have to think careful about is what I plan to do the next day. We don’t do anything or go anywhere without a plan. It’s risky business when a simple bus ride can turn into my worst nightmare. Which is being stuck in a suburb far away from home feeling dizzy, in pain and exhausted and the only way back is to get on another torturous bus.

Completing assignments seems to be one of the hardest things for me right now. I experience intense, daily migraines and the added screen time tends to make them a lot worse. I’ve been recommended migraine glasses and other costly substitutes but living out of home, unemployed with no government assistant makes getting help for any of my symptoms very difficult. 

However, I was able to get a wheelchair with a little dip into my savings at the start of this year. This has proven to be extremely helpful for going to the shops, monthly markets and doctors appointments. It is definitely very hard to be independent and apart of the community when you need to use a manual chair to get around. I have tried going for little walks down the road to the shops but that proved to be very difficult and something I’d prefer to never do again.

My joints and muscles tend to ‘give up’ when under constantly pressure so standing and holding things is also out of the equation. I spend a lot of my time either sitting or lying down, and to some that may be the dream but to me, it is frustrating and incredibly boring. 

The rest of the day tends to be pretty repetitive. I try to ‘spice things up’ by attempting to film a YouTube video for my channel that I just started using again, or maybe work on my business that I’m planning on launching in July. These creative projects keep me excited and motivated throughout my flare ups but it is heartbreaking when spending twenty minutes or more on something makes me double over in pain. 

Although my partner is incredibly supportive, my family is not. My mother has a misinformed opinion that the reason why I am in so much pain is because I’m not drinking enough water. Most nights she will call me, as I live in another state, and she will never forget to mention that this would all go away if I increase my water intake. I believe that it does help the intensity of my migraines but other than that I don’t see many things changing. My father on the other hand is a lot less forgiving. He believes I should get a job and that will not only solve my financial issues but also my health, so I took his advice and now I have an interview next week. This position is full time and it is about one hour travel by bus away from my house. Don’t be alarmed, we live very far away from the city so everything is about that distance away. Plus the state I live in is so small it only takes one and a half hours to get to the other side of the state. 

Although I’m very excited about the job, I am also incredibly nervous. So many things could go wrong when I’m alone but with my father’s stern words I feel like I need to get better and ‘suck it up’. My background and culture isn’t very accepting of illnesses and despite me showing my father the results to many specialists appointments, he refuses to believe that there is anything wrong with me. He believes I am making his all up to get money from the government. I feel incredibly alone whilst on the phone with him as I feel most of our calls focus on my pain. It’s like me verses him and not us verses the problem? I’m not sure if that makes entire sense but I just wish he spent more time and energy supporting me and less time lecturing and giving me additional stress. These stigmas about illness in my family is what prevents me from opening up to others. It took my many painful dates to tell my partner about this side of myself and I felt ashamed or embarrassed. I felt as if we are not equal because he takes on a lot of physical tasks and chores. 

Although it may seem that way, I understand now that it really isn’t. I provide a lot to our relationship and home together. I’m the person who plans our meals for the week, researches vegan and waste free alternatives and manages our finances. I clean when I can and although we’re still unpacking our boxes, I am working hard to making this place our home. 

If you can relate to this post; please make sure to reach out to family and friends. It’s important to stay connected with the ones you love and please try not to isolate yourself! 
Thank you for taking the time out to read my post, it was honestly a privilege to write and I hope this helped you understand a bit more about HSD!

Sincerely, 
Sage

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