Hope Is A One Way Street

hopeI woke up crying today.

It used to be that I could alleviate some of the pain by staying still…but today, the exact opposite seems to hold true.

It hurts to sit down. It hurts to stand up. It hurts to lay down.  Pressing my forearms down on a tabletop, placing all of my weight on my right leg, and dangling my left leg does seem to provide a little bit of relief. (What this position could be called, I have no clue!)

Earlier today, I wasn’t even able to walk the few meters from my bedroom to my bathroom. I had to resort to peeing in a jar.

A few hours later, I eventually did make it to the bathroom, and into nice, hot bathtub…but I struggled to get back out. I was not able to towel dry myself, so I had to ask for help. Part of me still tried to get dressed on my own, but I quickly realized how futile the situation was. My husband asked if I needed help, and I accepted without skipping a beat.

I wish there was something that could magically take away all this pain. (I even found myself thinking that I would forever give up my ability to move and walk, if it meant a final end to all the pain.)  But I’m not going to sell myself short. I’m not going to wait around wishing for what “might” happen. I’m going to continue to figure out what works. I’ve already found a little rhythm that seems to be helping at the moment. Stand for a minute or two. Walk for a minute or two. Sit down for a minute or two. Lean against desk for a minute or two.

I’m going to accept my current limitations. I’m going to accept the presence of all of this pain. I’m going to do what I need to do in order to get through this.

But I’m not going to lose hope.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

17 Comments
17 comments
  1. Brenda says:

    I am having more and more days like this too. I love this line from the blog.. “I’m going to accept my current limitations. I’m going to accept the presence of all of this pain. I’m going to do what I need to do in order to get through this….But I’m not going to lose hope.”

    Thanks so much for sharing ;-)

  2. Sister Flare Up says:

    I’ve been there. Hope is all you have when things get this rough. A quote from Dorothea Lange: (photographer re: having polio)

    “I think perhaps it is the most important thing that happened to me. It formed me, guided me, instructed me, helped me and humiliated me. All those things at once. I’ve never gotten over it and I am aware of the force and the power of it.”

  3. Lisa says:

    Hope is an effective (and inexpensive) drug. I am hoping that you hang on to the hope (it is limitless) and that the pain subsides soon. Hang in there.

  4. Rod says:

    Buddy,

    Maybe the time to consider a biologic has come… Hope you get over this flare soon, I know you will.

    Keep this attitude up ok?

  5. Wren says:

    Your courage is boundless, Guy. Thanks for sharing your pain, your perserverence and your hope with us; it surely helps in the encouragement/inspiration department. Sending warmth and hugs to you in your aerie in the clouds.

  6. Robin says:

    I’m with Rod. Enbrel completely changed my life. Before Enbrel I was on 27 mg of prednisone a day, in constant pain and I had to quit working out. After Enbrel I went to 5 mg, only had minor flair ups every so often and was able to run a 10K.

  7. jill says:

    I think if you are trying to get by without the aid of the drugs Guy, you are either being too brave or just a little bit precious. Why suffer so much, this time last year I was on crutches and unable to move out of the house without help from my Husband or someone helping me inch by inch. Its no laughing matter. I hate the drugs but I hate the pain more, and what the pain does not only to me but to the rest of my family. Give it a try, you can always stop it if you dont like it. The problem with RA its not just your illness, it becomes your family’s too.

    I still have my flare ups, but not to the same degree,, I still get so tired I have to stop the car sometimes to have a sleep before carrying on,but life is definitely easier.

  8. Laurie says:

    Sorry you had a miserable morning. Sometimes we have to swallow our pride and ask for help, which is really hard for me to do.

    I have often wondered why you are not on a biologic like Enbrel? Is it because of insurance where you live? It’s not a perfect med, but it sure does beat how I feel if I am off it. It’s a personal choice. My other question for you is why they give you Voltaren injections when you flare instead of taking oral voltaren daily to keep the inflammation down.

    I ask only because I am curious to see if it’s just the way they practice medicine down there, I noticed that you also have a lot of physical therapy which does not seem to happen here in the states.

    In any case, I hope tomorrow is more pain free. Gentle hugs!
    Laurie

  9. Halo_Jones says:

    You are so right in terms of doing whatever you need to get by. When I’m really bad it helps to wriggle about however I can on the couch or bed for a good half hour before I try to get up. Which looks a little funny but loosens things up!

    This will pass, as you know. And then you’ll know it’s one more thing you’ve successfully got through, one more thing you could cope with again. It’s next week’s source of pride!

    Sending hugs.

  10. Seeking Solace says:

    Accepting limitations is perfectly OK. Embracing the good days is even better.

    There is nothing wrong with holding on to hope. Sometimes, that all we have.

    Hang in there. :)

  11. RA Guy says:

    Thanks for all of the support, everyone. It’s early evening and I’m tired as heck (I just woke up from an extended nap), but I am feeling a tad bit better.

    And even though it is a personal choice, as Laurie states, I will respond to the questions and suggestions regarding the drugs that I do/don’t take.

    I am currently on a mix of five medications that have proven to be very effective in the past in controlling my rheumatoid arthritis. I am also less than a month into the resumption of taking them at their full dosages, due to previous problems with my liver count. So right now I’m in that lovely window where I’m taking all of my meds, but where they haven’t started to fully kick in.

    I completely expect things to improve within the coming month (and the knowledge that my meds have worked before is part of what continues to get me though the present), but if they don’t I will work with my rheumatologist on modifying my treatment program in a manner that works best for me.

    Over the past few weeks I have noticed a slight improvement in my baseline. Yes, it’s no secret that there have been many up and down spikes. I’m hoping (there’s that word again!) that the next few weeks will continue to bring additional improvement to my baseline condition, as well as more stability in my overall day-to-day progression.

    For my friends in the U.S., enjoy your long weekend!

  12. Sarah says:

    Hey RA Guy

    Sorry to hear you are struggling at the moment. I am so incredibly impressed and grateful Tgats you managed to write a post in the middle of this flare. I am flaring quite badly at the moment too and love reading what you have to say. You have such a great attitude about it all. Oh and I think your new position should be called the “Super Hero perch”. Feel better fast xxx

  13. Arthritis says:

    Thanks for sharing your pain with us. If anything, hopefully the venting relieves some internal frustration. I hope you find something that helps just for an extra minute or two.

  14. Cathy says:

    Cry, scream, get angry, feel sad, feel vulnerable, feel weak……but don’t give up hope. Today is just one day of your journey. Prayers of hope are coming from all over the world for you today. Feel them. Know that you are loved completely and that this day will end and better ones will be on their way. You know you are always in my thoughts and I feel deep sadness for your pain today. But I also see sunshine in your future. Feel it!

  15. Tracey au says:

    Hi all,

    I’ve never taken DMARDs in any great quantity. I’ve had juvenile RA since I was 12, I’m now 46. Pain is a constant but not often overpowering. Depression is a far greater enemy. But I’ve found it’s OK to have a bit of a wimp-out here and there, then come back later when if feels a bit better.

    I take slow release paracetamol for the bulk of my pain management – it works well to give me back the important bits of my life. I also take serrapeptase (dietary suppliament) for inflamation and extra pain relief. I know dietary supplements are frowned upon by the medical profession, but this one has 35 years of research in Germany and is currently a prescription drug in Japan where it is used for post operative pain relief and anti-inflamatory purposes in particular for women suffering from mastitis. Anyway this combination works as well as large doses of Celebrex without the nasty side effects.

    I’ve seen a number of rheumatologist and doctors, tried a lot of different drugs and I’m just over all the side effects.So effectively I self medicate (neither of my medications requires a prescription) and I’m much happier and feel much better.

    I’ve accepted that the deformities will continue, I’ve already been lucky to have almost 15 years of remission, I’m not expecting any more.

    I don’t know exactly what methotrexate does to alleviate pain, or help RA. I’m having a hard time understanding from various blogs, because I don’t read many positive write ups from RA users. Perhaps someone can let me know exactly what it does to help, from the point of view of someone with RA, rather than a clinical perspective?

    Cheers

    Tracey

  16. Maya says:

    I’m only just reading this post…and I’m so very sorry to hear you’re going through this painfu time. Believe me, I can relate. You have an incredibly strong and amazing spirit and your words have helped me through painful flares. Keep your head up, but also allow yourself to feel however you may feel – you don’t always have to be the superhero you are.

    Finally, please check out Cathy’s short, but poignant post and try to keep remembering it will pass:

    http://thelifeandadventuresofcatepoo.blogspot.com/2010/05/like-storm.html

    Hugs,
    Maya (www.lovingwithchronicillness.blogspot.com)

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