If you have been reading this blog for a while, you will know that I suffer from quite severe health troubles, with Chronic Fatigue Syndrome, aching joints and muscles and possible the worst immune system in the world. In fact, if you have been reading for a long while, you will probably also know that this blog was born out of my illness, in a time where I desperately needed something to fill the days when I was too sick to work.
Well, I have moved forward in leaps and bounds since first encountering these troubles and so has my blog, but it hasn't been without struggle and my heath problems certainly have not gone away. I wake up in pain every single morning. Some days, this pain goes away after an hour or so. Other days it stays with me all day. I have trouble walking up the stairs because my knees ache and I am tired all the time. There are days when I simply can not get out of bed and even blogging seems too hard. I'm sorry for the length of this post, but I feel it's important for you to know what's going on in my life as dedicated readers, and I have a lot that I need to get off my chest regarding how my health is lately.
Lately, there have been a lot of these days. My condition isn't one that can easily be treated and so for the last year and a half I have been doing my best to learn to manage it and to build up my stamina so that I can go to uni, work and basically just live a full life. These uni holidays have been a real test of my endurance, as I have been working in child care which is very strenuous work and testing how many days of work a week I can cope with. I find I can do four if I have a break in the middle, but I end up needing quiet days on the Wednesday and Saturday if I do. Three is ideal for me right now. It gives me enough money to save a little these holidays, while not tiring me out too much or taking too much of a toll on my body.
My symptoms have gotten gradually worse, especially over the last 6 months as I have struggled to cope with aching muscles and joints, fatigue, loss of appetite, a poor immune system and hair breakage and loss. My specialist appointment last week was both much dreaded and much anticipated and I was torn between hope for a diagnosis and treatment and fear of what the gradual worsening of my symptoms might mean for my future.
I left the specialist's office with confused feelings as well. Relieved to finally have a name for the condition I've struggled with for three and a half years now, dread of what that one little word means for my health and anxiety over what it means for my future. It took me a good while in a coffee shop to sort out my feelings enough to even be capable of driving home, and a good while longer to accept that it is possible I will be on medication now for the rest of my life. The diagnosis I was given is that of Systematic Lupus Erythematosus (SLE) which I suppose you could Google if you wished (although please don't let it scare you too much. I would recommend
this website for a good understanding of what it is) and it is a lot for me to deal with right now, so I would really appreciate your support and understanding on the blog. It is a scary thought for a girl of 19 to be on long-term treatment for a disease which cripples my ability to live like a normal teenager, but I am thankful that we have caught it early and that my treatment may prevent my symptoms from getting any worse than they already are. I am also thankful we are able to use a very low level treatment for now and that so far, I haven't felt any side effects from this treatment.
The hardest part for me, is trying to instil some sort of understanding of my condition in my family and friends. When you look normal on the outside, it is hard for people to understand what is going on inside you and I am really struggling with things like making my parents understand that some days I am not up to doing anything other than sitting on the couch, as they mistake this for laziness more often than not, not realising exactly how exhausted I might be, or that I may have woken up in severe pain that morning which just has not gone away. Because pain is an everyday thing for me, I try not to complain about it. It's become a part of my everyday life and so my family doesn't always realise the extent of my illness or what it does to my body. I try to communicate with them, but it is so hard to get across what I am feeling at any particular time. Sometimes the best I can do is to say "I'm feeling really sore today" when really I want to say "I'm floppy tired with sore joints and tingly-sore arms and legs which click painfully every time I move and I honestly do not think I can move right now", a perplexing description of the fatigue and aches and pains I experience every morning, which sometimes lasts the day.
I am also really scared of what this diagnosis means for my relationship with Jake. I know he loves me very, very much and I know he tries to understand my illness and cater for my needs, but sometimes when I don't feel up to doing something he really wants to do, or going somewhere he really wants to go, he gets a little cross with me, later admitting, "You look so normal, babe. Sometimes I forget about your lupus and forget how tired you get and how much pain you're in."He is such an adventurous person with a love of extreme sport and I want so badly to share in his adventures and passions. A lot of the time though, I simply do not have the energy.
Compromising on adventures - driving to Mt Tambourine for a little bit of shopping,
fine food and a rainforest walk.
I can't say I'm not worried for our future and that I'm not worried about what this means for our relationship, but I do hold out hope that we can reach some sort of middle ground with this - going for bike rides together, swimming at the beach, the odd day at a theme park or the water slides and I have made myself a pact to always try to do something super fun with him on days when I'm feeling good - learning to surf, rides on the motorbike, go karting and learning to kite board are reserved for these days. A big part of me trying to make up for what I can't do with Jake is watching him do his favourite sports while lounging with a book so that he feels my presence and support without me doing anything physically exerting. All things considered though, Since my specialist appointment I do spend a fair bit of time scared out of my wits that he is going to leave me for some hot, sporty bitch on a motorbike someday, and madly trying to shake off my doubts that he can stick with me through this illness, whatever it may bring.
I am also worried about how my illness could progress, and what affect this might have on my personal relationships. What happens if my lupus starts attacking my organs, or if my body rejects my babies and I miscarry someday? Where is my life going if this illness is going to be ever-present within it and how will we all cope? I try not to think of the worst case scenarios here, but the idea of kidney transplants and miscarriages are always at the back of my mind and sometimes I worry more about how Jake and my family would cope with this than how I will.
I'm sorry to dump on you all like this, but I needed to get this off my chest. It is too much of a burden to carry alone and the weight is already leaving my shoulders as I write this. You have all always been so supportive of me, and I appreciate you all so much. If you've been through something similar, I would love to hear from you. With lupus being more common than AIDS, cerebral palsy, multiple sclerosis and cystic fibrosis combined and with no known cause or treatment, I could use a good chat with other people who suffer from the illness. I find it hard to talk to family and friends because it's just so hard for them to understand. Also, if you have any questions, I'll do my best to answer them and please don't be afraid to ask. Thanks for sticking with me through this post guys, I know it was a long one!
