A Bitter Pill To Swallow – #medications #startingover #noteasy #autoimmune #support #thisismylife

There are some pit stops along the road when you have a chronic illness that can really be very difficult to cope with. One of those times is when, despite trying a drug and working SO hard to cope with all the side effects in the hope of feeling a little improved, you reach a point when you can no longer avoid what you know in your heart to be true. It hasn’t worked. They call it “failing a treatment” and that pretty much describes you feel. Failed.

You see, when your specialist first discusses starting you on a new a drug, they say all these wonderful things about why they feel so confident in recommending you a drug and how there are some wonderful results experienced by people taking them. My mind would start racing. Its like a jolt of hope and my spirits would start lifting and I would start imagining my life improving like a giddy school child!

Occasionally they mention to you things like “there may be some unpleasant side effects but it will be worth the risk to get you some relief.” I just nodded and fantasized about improvement. As my husband wheeled me out of the office I thought to myself. Could it be possible? We smiled and waited… and then we waited some more.

After the first injection and the first wave of nausea and tiredness… we kept waiting.

After fevers, pains and stomach pains… we kept waiting…

As the weeks turned to months and we consoled ourselves with the fact that “…most people find that they must wait between 6 – 12 weeks for the drugs to start to take action…” we clung to this like a toddler clings to a security blanket… and we waited.

And then the inevitable truth set it. It wasn’t working. All the pain and anguish I had been through was ultimately for nothing. There wasn’t going to be a light at the end of this tunnel and that can be a very sad and lonely realization indeed.  It is literally a bitter pill to have to swallow.

Back to the specialist who takes my latest blood tests and confirms what I already knew to be true. Its not working. We both look at each other and I am not sure if I just imagined it but it FELT like I saw a faint look of disappointment on her face. Was it just me? It felt like I was in the school masters office after being caught smoking in the toilets. In short, I was feeling like I HAD DONE SOMETHING WRONG. I can feel the burning of tears starting to pool in my eyes and I start to stare down at my feet. Cant make eye contact now until I get back on top of the emotions.

“Well, we do have a couple of other options left, how about we try {insert drug name}? I have had a lot of success with this one in my other patients…and I might just get some more scans to see what new damage or activity we might be looking at…”

And here we go again.

It’s not easy taking all these pills, injections, medications, infusions only to find that the relief that they give is only just allowing me to function at all and it is my sincere hope that one of those little IV bags will be my pot of gold at the end of the rainbow… but the feeling of trying and ‘failing’ is truly a huge part of the battle.

I know of many people who have tried them all and had no relief or improvement whatsoever, and it scares me that I could be one of them. I also know of people whom the drugs may have worked for a period of time and then suddenly, and without warning, just stopped and that scares me too.

The injections that I get into my joints. Those long needles which are placed into the bones and joints to give some relief are no longer working for me either. My doctor warned me that it could happen, and it has.

So now its back to the drawing board and I will be adding another drug to the list of ones I have tried whilst still making sure that I take my supplements and approved vitamins.

Back to the machines I go to film my joints, my brain, my spine, my muscles, my nerves and my organs. We are at the point where everywhere we go they know as by name.

Sometimes it is really hard to muster up the enthusiasm to start at the beginning again, and the urge to say “enough!” and stop taking any drugs can be very strong. I sometimes fantasize about it in my mind. BUT for me the risks that I may be taking if I don’t keep trying, even though they may be theoretical, are still too high for me to give up.

Luckily for me I have a partner that is a constant source of encouragement, although sometimes I feel like it can be irritating and frustrating, and so I climb back on the horse again. I wish people could understand the realities and truth of the choices and challenges for those with these diseases are never easy and consequences can be heartbreaking.

Maybe this time it will be the help I am looking for!?!

As long as I keep fighting that’s the main thing… right?

Gentle hugs,

Trish

4 thoughts on “A Bitter Pill To Swallow – #medications #startingover #noteasy #autoimmune #support #thisismylife

  1. Oh Trish, I am so sorry. I really don’t know what to say because as bad as I have been and as sick as I have been…none of it was ever anything like what you have gone through and are going through. I have had bad months. A few really bad years…..yet, Every time I get a long reprieve…..where I manage and manage well. Walking , working…I have bad days. Weeks but I bounce back.
    The Cancer overall was the worse….The drugs there , reacted negatively with the ones I take for my one working kidney. I had to do whatever i could to hang on to the kidney. As bad as it was then….with dialysis (I still have dialysis but I can usually do it at home)the chemo and radiation about did me in.
    I was one of the lucky ones. Or so I thought.
    Not a year after beating Cancer, meeting Danny and falling in Love……Bobby died. Not sure why I mentioned that except I wonder WHY I lived and he didn’t.
    My body isn’t reacting well right now and I knew what my doctors would say before I went in.
    I am still walking though. HUGS Gentle Hugs.
    Sarah

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    1. Hello Lovely! Thank you for dropping by again! And thank you for everything you share and discuss. Firstly my intention for writing any of these posts is always as a learning tool for those that are unfamiliar with Autoimmune diseases and there treatments. I NEVER intend the to be an instrument of sympathy or pretending that I have it harder or worse than anyone else out there who has health challenges. Its simply sharing. As for the comment you made about beating your cancer and Bobby dying I can only empathise in how that must feel for you but none of us have answers as to why some people can respond to treatments and others don’t. I am not one of those people who say “it was attitude… or mind set… or taking this… or eating that…” simply we dont have all the answers to life and I doubt we ever will. We just cope as best we can with what life hands us and try to make some good choices were we can. I don’t know why my diseases are as they are, neither do all my specialists other than that they are systemic and therefore management is the focus of all that I try to do. In the meantime. Through blogging and reaching out to others who have gone through (or still go through) health issues I find myself connecting with an amazing group of people and experiences that is beyond words! Thank you for coming into my life. Take care. Always, Trish x

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  2. I’m SO sorry that you haven’t found anything that will work, and you’re on a merry-go-round with the doctors. I think you’re SO like those lyrics ……… “I get knocked down, but I get up again…… you’re never going to keep me down” (Chumbawamba) We sometimes need to take a rest after everything ….

    I’m so glad that you’ve got a hubby like you have …… it’s lovely (insert a love heart symbol here!)

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    1. Thank you. It’s not just me its so many Autoimmunies out there
      But it just illustrates how complex and challenging treatment is. For example many of us are on chemo meds for the rest of our lives… But yes. We have to try and get back up but it is so so hard. Harder than describable. Hubby and loved ones and people like you are great ✨❤️✨ have a lovely day!

      Like

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