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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