I hope you are all well. I realise that my posts recently have been few and far between, and honestly I think it's time to give you an explanation as well as thanking you for sticking with me.
This post is coming from me being in a very dark place, and not quite being able to see the light. I figured, why not use the tools at my disposal to write it all down and get it out.
Almost 3 years ago, I was diagnosed with Rheumatoid Arthritis, for those of you who don't know, or are unsure about what exactly that is, RA is by Google's definition a chronic progressive disease, causing inflammation of the joints, resulting in painful deformity and immobility in the fingers, wrists, feet and ankles. With RA being an Auto Immune disease, for reasons unknown the immune system, which normally protects our body, instead attacks the body's own tissues. The fact that it's a chronic disease means it cannot be cured, only treated.
When I was first diagnosed, I thought fuck it, I can get through this we've caught it early, we can get this under control and into remission. Looking back now, I can't believe how naive I was. Having this disease, that limited my daily activity, that was attacking my immune system, that had me in constant pain, meant that there were days when I felt it wasn't even worth getting out of bed. I pushed through it, I kicked my own ass daily to do the simplest of tasks.
In the beginning people would ask how I was doing, offering help and support, kind words. My biggest motivation was my daughter, I kept pushing myself to be a better mother for her, being a single parent, I had to, I wanted to be the best mother I could be, because truly, she deserved no less.
I was started on a drug called Salazopiran, I spent months on it, seeing and feeling little improvement, watching the letterbox constantly for that letter to see a specialist to get treatment, to get some semblance of my life back. 18 months later, that letter still hadn't come through the letter box, and my condition was worsening. The tiredness, the lack of motivation, the sheer exhaustion after the simplest of tasks, the irritability, the pain, the swelling, the feeling of my hands inflating to three times their normal size and feeling like if i pricked my hands with a pin, they would deflate.
I wanted relief, Jesus more than that, I NEEDED it. After frequent visits to a very empathetic doctor, we decided while I was still waiting for the appointment that would never come, we would begin a more aggressive treatment course with a drug called Methotrexate. Using Methotrexate came at a price. Dizziness, nausea, vomiting, hair loss, there was a serious and very real risk of damage to my kidneys, in higher dosages Methotrexate is used to treat cancer, to abort children, it was made very clear that under no circumstances was I to allow myself to get pregnant.
So I began to take this drug, hoping and praying that it would give me even a day or two a month where I felt ok, not great not good, just ok. Meanwhile a letter of referral was sent to a private specialist rather than the public, which by the way I'm still waiting to hear from.
During the Summer just gone, with the Methotrexate doing the bare minimum to give me any sort of relief, my symptoms began to worsen, I began to get a different sort of swelling. My hands began to have a constant feeling of pins and needles, they trembled endlessly, I would lose power completely in my hands, dropping things, breaking things, it's now February and these symptoms haven't gone anywhere.
I couldn't write, colour with my daughter, straighten my hair, pluck my eyebrows, shave my legs, carry an expensive glass, apply my eyeshadow, wash my hair, do the everyday tasks that we all take for granted. I began to stop sleeping at night, because if I slept the wrong way, my hands would swell and the pain would be so intense I would wake up in a cold sweat, unable to move my hands, bend my wrists, crying because they'd take their time deflating, or at least that's what it felt like.
So I started to slip into a dark place, I began to fear leaving the house. I have to push myself to bring my daughter to school in the morning. It takes me days to psych myself up to go into town or to Dublin for an event. I feel so uncomfortable in public that I feel like I might vomit. I have become socially inept. It terrifies me. People I know and love, friends, have been convinced that I'm annoyed with them because of this.
I finally got to see a specialist privately on Tuesday, I had to pay €220 for the privilege. I got all my hopes up thinking that finally, someone can help me. After a few routine tests he told me that not only do I have RA, I also have Carpal Tunnel Syndrome in both hands along with Tendinitis thrown in for good measure. These are apparently associated conditions of RA, the CPT and Tendinitis have to be treated before a new course of treatment can even be considered.
So after hearing this news, I started to cry. I felt like my struggle with this disease had gotten the better of me, and coming to the specialist to get better and instead hearing that right now I have something else that needs sorting first, was just too much. His reaction was almost patronising, it annoyed me and it made me angry. 'Aw, do you think you're a little bit depressed?!' No, just because I'm a woman, who's crying at a substantial setback, does not give you the right to assume I'm depressed. I'm Frustrated!
A course of incredibly painful injections into the wrist and nerves later, I was bandaged up and sent on my way. My father who met me at the door with a concerned look on his face said 'Jesus you look like he kicked the shit out of you'. I laughed it off, because I couldn't cry like I wanted to. The utter frustration of being sent on my merry way without even a return appointment made me feel like it was hopeless.
And that is just how I feel now. Unless you have this absolute wanker of a debilitating auto immune disease with CTS and its ugly sister thrown into the mix, you just have no idea what it's like to get through a day, or night. You get sick of talking about it. You can be in the worst state, get a phonecall, someone asks how you are, and you say great. It's not that people get sick of hearing about it, I think there comes a point where they just dont know what to say. Because really, what can you say? I know it could be worse, it can always be worse. But I've kept my chin up for so long holding this all in, ignoring the part of me that has been screaming inside me constantly that this is relevant to me, that it cant just be silenced anymore, I feel like I'm slowly losing my mind.
I don't want this to change me, to change who I am. Right now I feel so disheartened and bitter. The injections I was given that were meant to help? They've made it worse, I have limited mobility in my fingers, hardly any movement in my thumbs, it's taken me 3 days to write this post because I can barely type, I can barely move my fingers from those god awful injections . I need to know that things will get better, this isn't me looking for attention or feeling sorry for myself, 3 years I've kicked my own arse through this, and I'll continue to do so.
You might be wondering about the title of my blogpost, it is a dark time for me, and I know I'll push myself through it, I just need to figure out how to turn on the light.
Thank you for reading if you've gotten through all of it. I would just like to sincerely thank my friends, who have always been a constant source of support. Lyndsey, Anne Marie, Donna, Sarah, and Chloe, I know I may be trying to figure out how to turn on the light, but you girls are guiding me closer and closer to it. I am truly privileged to be able to call you my friends. I needed to thank you, because without you, I would be lost.
