My new ‘normal’

June 19, 2014 § 14 Comments

I have recently been told that RA is most likely not the correct diagnosis for me. I still want to support RA awareness week and the National Rheumatoid Arthritis Society (NRAS). For now I will refer to my condition as RA or autoimmune arthritis…

This week is RA awareness week and while I’ve been doing my bit to raise awareness (writing an article for a local magazine, putting up posters and leaflets in GPs and pharmacies, collecting donations) I realised that the worst thing I do for RA awareness is spending most of my time downplaying symptoms to those around me. I really shouldn’t wonder why people don’t realise what I go through, the severity of my symptoms or even the fact that I have pain all the time. I’ve realized that I need to be honest about my symptoms once in a while to truly raise awareness of this condition.

Since I started getting symptoms over two years ago, I am in pain all the time. My new ‘normal’ is pain- that’s my baseline. This pain varies between an uncomfortable buzz which I can push to the back of my mind to carry out tasks, up to agony which leaves me in bed for days rotating ice packs around my body and taking strong painkillers which leave me dizzy and nauseous.

I constantly feel this pain in my wrists, elbows, mid and lower back, my sacroiliac joints (the joints between the pelvis and sacrum) and ankles. Sometimes my fingers, toes, hips and knees join in and there’s no real trigger for those. Generally the pain I feel is a deep, burning, gnawing pain. All my muscles feel tight and achey, like I’ve just run a marathon or something. I feel like someone is pressing all my joints together, they feel awkward and bruised. It’s really hard to articulate how I feel and reading it like this, it’s frustrating because I just can’t explain it. To feel like this constantly is emotionally and mentally draining.

Certain things I know will make my joints worse, so I avoid them as much as I can. Sitting or standing still for longer than a couple of minutes just builds up the pain until I want to scream. I can’t carry much in my hands before I feel like my wrists and fingers are being pulled on a medieval torture rack. Even sleeping causes pain because I can’t lie on my back or front due to the back pain, but lying on my side puts too much pressure on my shoulders and hips. I wake regularly in the night to change position and stretch my joints because the longer I’m still, the more the inflammation builds up. Ironically, you’d think a night in bed would be the best thing, but the mornings are the worst. I wake up feeling totally un-rested and my joints feel crumpled up. Oh how I wish for the days where I’d jump out of bed, feeling the bountiful energy and wondering what endless things I could do that day! Okay, maybe that’s a rose-tinted view, I was never a morning person, but I certainly physically felt good even if I was a grump.

The physical fatigue I feel is like no fatigue I ever experienced before getting ill. The closest I can get to explaining it is like when you have the flu. Not a normal cold people get in the winter, but full on flu. When you think about, my body is constantly producing immune cells which are attacking the linings of my joints. This in itself, produces inflammation throughout my body- my body is spending so much energy just to do this! It’s no surprise that I’m constantly exhausted and I feel sluggish.

I don’t talk about my condition this honestly to people, especially in person, because I don’t want to sound like I’m complaining. This is my life. There is nothing I can do to significantly change it and actually at this point, I am probably at the best point I physically will ever be. Unfortunately, RA is a progressive condition. I can look after myself as much as possible, try to save my energy, avoid activities which I know will aggravate things, take my meds regularly, keep looking for that ‘miracle cure’ that people seem to believe exists. But in the end I, like anyone else, want to live my life, follow my dreams and be happy. I want to live a worthwhile life but feel like I’m up against it, like I’m have to battle my body every step of the way. I have to find that happy medium between doing what I want to do and what I have to do. I don’t want to feel like I’m limiting myself, so I have to consider everything and work around it. I do feel sad that I cannot do everything I want to do, that before agreeing to any plans with friends consider whether I have too much going on around that day to commit- of course, I may just wake up on that day, even after conserving my energy for weeks, and my body tells me there’s no way we’d be making it.

The one thing I can change is other people’s knowledge about RA, who it affects and how. Just reading a few articles on people’s experiences with an invisible illness show the kind of ignorance we face. To other people, I must look like a happy, healthy 22 year old. They can’t tell that I am sometimes in agony and when I pop to the shops it’s obviously a good day. If I have to get a bus at a busy time and take a seat, it’s not because I’m an ignorant young person, it’s because I need it. You cannot judge someone from the outside as to whether they need some help or a seat and hopefully by a few people reading about my experiences that may just help change their perceptions. It’s very strange to feel like you have to tell people about a very personal aspect of your life- your health- but sometimes it is necessary.

Thank you for reading, please feel free to comment and share my writing. I really do hope that through this I can help in a small way. You can contact me at onshegoes@gmail.com

Keep well,

Zoë x

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§ 14 Responses to My new ‘normal’

  • mrsbettyboop says:

    Well said!!!! I may use this to help explain this evil invisible illness. Gentle hugs x x x

  • steadyeyeshakybow says:

    Couldn’t agree more with this post. Thanks for sharing it! Pain free internet hugs xxx

  • Ted Luoma says:

    I know how you feel. I’ve recently been diagnosed with ankylosing spondylitis and I back out on commitments more than I would care to. Then there are the commitments you just have to power through no matter how bad you are hobbling.

  • My normal is pain too and has been for some years now. I finally started a regimen of tramadol and muscle relaxers that seems to make me more functional than I’ve been in years. I’m 32 and have been dealing with RA symptoms since 14. I feel your pain and I hope you find something that helps.

  • seemorrigan says:

    Thank you so much for sharing this on your blog; it’s so important that people hear what you struggle through every day. Sometimes I wish I could get a tattoo on my chest that says “just because you can’t see it doesn’t mean I’m not in pain.” I can very much relate to how callously judgmental people can be. Some try not be obvious about it, making repeated sidelong, staring-but-not-really glances, while the more self-righteous glare, not even trying to hide their disgust, as I ease myself out of my car parked in a handicap space, or use the elevator to go up one floor, or ask a store employee to carry something to my car. As if it was any of their business. As if they had any idea what our lives are like, dealing with pain, every single day.

    But I do, and my heart goes out to you. Hugs, and stay strong. 🙂 -TGA

    • onshegoes says:

      Thank you so much! I was really worried about this post but people have responded well to it. I guess I just got tired for making things seeming easier than they are, almost apologetic, then wondering why no one understands! I love your posts so will be following you (Didn’t mean for that to sound creepy!) Gentle hugs!

  • Joanna says:

    Hi, thank you for following my blog!

    I’ve just been having a read through yours and I really admire how open you’re being about your condition. It’s something I knew very little about and I know you haven’t got a diagnosis but it is still interesting and incredibly important for people to know more about ‘invisible illnesses’.

    I think your honesty is fantastic and it must’ve been hard to write about it, so thank you for your blog 🙂 I look forward to reading more.

    P.S. did you find me through the Pillow Fort on Facebook?

    • onshegoes says:

      Hi Joanna, thanks so much for reading and for your lovely comment! Yes, it’s been quite a roller coaster- having a diagnosis for a couple of years, then being ‘undiagnosed’, but it gives me hope that we’ll find a better treatment soon

      Yes, I found you through the Pillow Fort (love it!) You’ve got a great blog, really looking forward to reading more

      Zoë x

  • krog8 says:

    I just wanted to say hi! I’m glad you continue to press for knowledge and are working with a new Rheumy.

    I have pain very similar to you and also have Ankylosing Spondylitis (as someone else has mentioned already in the comments I believe). One of the biggest things I had trouble with in getting diagnosed was that women’s symptoms seem to be different than men’s, my inflammatory markers are normal due to the high dose of NSAIDs I take and it’s hard to explain the pain. I have enthesis in many of my ligaments, including wrists, fingers, shoulders, hips, ankles and toes as well as collarbone and breastbone area and then the pain from starting to fuse in my SI joints and back. I have tried Enbrel and Humira in the last year and both help with the pain but aren’t quite “working well” for me. I see my Rheumy again next month but I feel we’re on the right path.

    One thing that helped me with sleeping (like IMMENSELY) is taking Amitriptline 10mg at 7pm to fall asleep at 10pm and sleep a good 4-5 hours. I used to sleep 2-3 hrs a night total and maybe an hour at a time because of the can’t sleep on my back, front, side issues. Also, taking the Enbrel/Humira helps some as well. I also am taking 800mg of ibuprofen 4 times a day.

    Good luck! I hope you find something that helps and soon 🙂

    • onshegoes says:

      Hi! 🙂 Thanks so much for reading and commenting! I’m sorry to hear you have similar issues but I’m glad you’re continuing to find things to help ease symptoms. I’ve not been very active on this blog lately but I’m hoping to start posting regularly again soon. Thanks again! x

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