Friday, 31 January 2014

Happiness Can Be Found In The Darkest Of Times, If One Only Remembers to Turn On The Light...

Hey Ladies,

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.

My day to day life is as normal as always, my routine will stay the same, I wont let this change the person I am, I don't even want to feel fantastic, I just want to be ok, I feel like I'm asking for the moon and stars saying that, but after three years of being chronically ill, and keeping my mouth shut for the majority of that time, I feel like if I don't get this out I'll scream.

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.


  1. This is such a brave post and I really admire you for writing it. I really hope you find some relief soon and that they find a cure. You're so brave, your family especially your daughter must be very proud of you xxx

  2. Aundrea, I just don't know what to say, so all I can do right now is offer cuddles and say that you're in my thoughts.

  3. Aundrea, this is such a well written, inspiring post. Just from reading your blog or following you on Twitter I would have no idea of what you go through. There's really nothing I can say, but I hope you find some form of relief & that you can get back to feeling okay, & that all the little important things like playing with your daughter & doing your make up are part of your everyday routine soon. I will keep you in my prayers x

  4. Woah I had heard of rheumatoid arthritis before but I never knew what it was actually like!! That sounds horrific. You are so brave though for wanting to keep your routines and your life normal and be there for your daughter. This whole post is just so selfless. Obviously I have no real idea what you're going through but I hope that things will get easier and that seeing the private specialist will help once the carpal tunnel and tendonitis are dealt with. Also with regards the public specialist if you ring the person who made the referral/the actual specialist office (if you know where it is) and say how much your daily life is affected and how its making you feel you may be seen quicker...worth a shot. It is great that you have such supportive friends to help you through this and I really hope that while this is a life long thing that you manage to get treatment that will alleviate some of your symptoms and pain

  5. So sorry to hear how difficult things have been for you, Aundrea. The toll of a chronic illness on your well being can be enormous. The strength of your person shows through in your writing. It sounds like you get great support from the girls. I wonder what other supports might be available to you right now. It can be good to talk to someone going through a similar situation, whether there might be a specific RA group or one for people with chronic illnesses, it might be worth thinking about if you haven't already. I hope sharing your experience here has given you even some relief - temporary or otherwise. You're in my thoughts. X

  6. Really hope things get better for you, sounds like a really hard time but have my fingers crossed for you that something will come around that will help you

  7. I know we don't know each other, Aundrea, but I just want to sit you down over tea/coffee and give you a big hug. There is so much of this blog post that I could have written myself, I even have a half finished post about my struggle with the side effects of Methotexate saved in my drafts folder.

    I was diagnosed with Juvenile Rheumatoid Arthritis, which can be temporary or can stick around and become Rheumatoid Arthritis, when I was 12. With me there was a period of remission before I was diagnosed with RA and Carpal Tunnel Syndrome (the wrist splints I was given to sort my CTS out have worked wonders though) at 19. Medication wise I've tried pretty much everything, non-steroidal anti-inflammatory drugs, steroids, really strong painkillers which left me in a drug induced haze for a long time and eventually I was prescribed Methotrexate. At this stage I've been on Methotrexate for more years than I care to remember and, thankfully, for me I found a dosage that worked at keeping the pain and inflammation at bay. At least until now.

    The fatigue never left me though and I've lost count of the amount of days/nights out I've cancelled at the last minute simply because I didn't have the energy, no matter how much I actually wanted to be there. Most of the time I'll battle through, in a 'I may have an auto-immune disease but I won't let my auto-immune disease have me' kinda way, but sometimes it just floors you so much that leaving the house is impossible.

    One of my main issue with Methotrexate, side effects wise, has always been the terribly itchy legs it left me with. Annoying, but I can deal with it. Over the last few months, however, I've had new side effects hit me. My hair is thinning at a considerable rate, I've developed pneumonitis (turns out that cough I've had on and off for over a year was Methotrexate induced) and the nausea (which I used to experience only the morning after I took my weekly dose) is now all day every day. I had been warned that these things could happen when I first started Methorexate, but hadn't been expecting them to strike all these years later without my dosage changing. Honestly, I'm at the stage where I'm wondering what to do next.

    Getting an appointment with a Rheumatologist would be a good place to start. I had been seeing one regularly, but since I moved last year my old clinic reckon I should be seen by the Rheumatology service down here and the service down here consider me to be already under someone's care so won't see me. Ugh, I hate the public hospital system sometimes! And although my new GP can monitor my bloods and prescribe Methotrexate, they're really not in a position to dealing with all my issues or suggest other treatments for me to try. So I wait.
    It's good to see you have a decent support network around you. Having people like that in your life is invaluable. To pick up on Makeup Over Mind's comment from above, I'm not sure if you've already done this, but it might be worth checking if there are any Arthritis Ireland support groups in your area. I've dipped in and out of them over the years.

    I hope you manage to find relief, temporarily and long term. Auto-immune disease can be hell to deal with, but it is possible when you find the treatment(s) that work for you to be yourself again. It's just a shame that finding the right treatment(s) often takes a route down a long and dark twisty path.
    Anyway, I'm sorry for the really long comment but I wanted you to know that there are people who understand completely what you are going through. You will find a way to turn on that light. It sucks in the meantime, but you will get there.

    Take care. x

  8. Whishing you all the best Aundrea. You are an amazing Mam, never question yourself on that one! Realy hoping you get some relief soon. X

  9. My heart goes out to you Aundrea. The mother-in-law (I guess you could call her) is living with something similar so I can only imagine what you're going through.

    I really admire your attitude throughout this. You have to allow yourself to feel frustrated, God you're only human! But your strength through all of this comes across so strongly in your words and I've no doubt that will guide you through all of this.

    I wish you all the health and happiness during this time. I'll be keeping you in my thoughts - and if you ever need to vent, just go head and vent! xXx

  10. This is beautifully written Aundrea and I think it'll help a lot of people in similar situations, so you should be seriously proud of yourself- not only for writing this but for everything you deal with on a daily basis and the fact that you keep going through it all and set such a good example for your daughter. Sending loads of love out to you hun. xx