What do you need to know?

Over the course of Arthritis Awareness Month I’ve read a number of really good lists, 10 things I wish I knew about RA, 15 things you shouldn’t do with RA etc. And I got to thinking today, if I could send one out to everyone I know, what would my list contain? What would I want those who know me and love me to know about me & my RA?

I don’t pretend or claim to speak for anyone else with RA or any other chronic illness, this is very much my list based on my experience. That doesn’t mean of course it’s not shared! What would you add?

1. I didn’t choose this, it’s happening to me.  I will do everything I can in conjunction with my medical team to live as well as I can.  But living with this is my only option, there is no cure. 

2. Talking of cures… Whilst I know your intentions are really good, please keep your suggestions regarding treatments to yourself.  Believe me I have researched this to hell and back,  it’s how I deal with stuff.  I need to know it inside out and plan my attack.  And if I, my rheumatologist, my GP,  my OT and my HCA haven’t discussed it, it’s because it’s NOT beneficial.  So please keep your wheat free/organic/juice/faith healing stuff to yourself.  I ask this with love, thank you very kindly.

3. I am not lazy.  I am not ‘giving in’.  I find the fatigue the most debilitating aspect of RA.  I’m either asleep, trying to sleep and failing or wanting to sleep, it just never ends.  I can sleep for 2 hours or 20, I feel no better.  If I’m lucky I get 2 to 5 hours on a good day when I can be up and about,  but slowly.  I have at least two days a week when I cannot get up because I am simply too exhausted.  It’s a physical weight that never leaves me. 
It’s not a case of mind over matter, or giving in or pushing through, I literally cannot stand. 
All the usual bloods have been run, tests done etc.  Both my GP and my rheumy agree it a known and classic symptom of RA, and the hope is if they ever get my damned disease under control it will lessen.  Maybe. 
I feel like I’m losing a chunk of my life to this at the moment, if I want to do anything it’s planned between 1pm and 5pm which are generally my best hours. 
I’ve even had to cancel doctors appts last minute because I can wake up in a morning and know immediately my tank is empty, I’m going nowhere. 

4. I am in pain every minute of every day.  There is no let up, no respite.  Whether you see me huddled on my sofa at home or out with friends laughing, I am in pain.  Doctors like a 1 to 10 scale.  It’s not ideal but to give you an idea 1 would be a graze, maybe 3 a sprained ankle,  5 a small bone breaking, 7 a bad tooth access, 10 involves vomiting and/or passing out. We tend not to use 10. I am never below a 4. I am daily up to a 7. I hit 9 once last week for a couple of hours.  Don’t ever mistake me smiling for being pain free. 

5. I need your company! The easiest thing in the world for me to do is stay at home.  I have meds, heating pads, comfy cushions etc.  I know going out hurts.  Some days I can manage it and others I just can’t, so I’m not very reliable, but please keep asking! I want to come, I want to see you! Feel free to drop in to me unannounced.  I don’t care if you wake me, conversation and laughter make me feel far better than sleep does.  You may just have to put up with me looking like the bride of frankenstein but I’m worth it!

6. I have reached out online and found some of the best support in the world.  You have to be sensible, you have to be selective and you need to avoid groups where negativity thrives, but there are some amazing fellow patients out there, and boy do they know stuff! I’ve learnt way more from my online RA family than from any medical professional.  I am in regular contact with lovely people who are paid to advocate for RA, I’m in touch with writers who have written fabulous RA books and blogs and I love them to pieces for touching my life. The Internet is an amazing thing. 

7. Particularly at the moment as I am still coming to terms with my diagnosis I feel angry.  I have why me moments.  Hell, I have why me days.  I feel robbed of things I have always taken for granted, like energy and the ability to earn a living.  Or cutting up my own dinner.  Simple things that we think so little of, yet the impact they have on our lives is huge.  I have accepted that acceptance will take time.  It’s OK to be angry at this disease, as long as I’m not angry at me.  Back to point 1, I didn’t choose this. 

8. Depression and chronic illness pretty much go hand in hand for over 35% of patients.  It’s hardly surprising, a chronic illness diagnosis pretty much sucks.  There may be better days, but there is no cure.  I have support with this too.

9. I live daily with a bubbling fear in the background about the future.  We know RA increases morbidity.  We know RA can shorten lives.  RA, and the meds that go along with treating it all bring their own games to the party.  Baldness, moodiness, gaining weight,  nausea, dry skin and lymphoma anyone? Or shall we just not and wait for the wheelchair? These are the decisions every RA patient makes every time we start a new med.  The next one I’ve been offered increases the lymphoma risk and adds in the chance of retinal and corneal changes affecting vision.  It’s that or guaranteed continued joint damage.  I will generally err on the side of taking the med, weighing the odds and hoping for it to work and for the the side effects to be rare and small.  But they are there in the back of my mind all the same. 

10. Lastly but not least, if you ask how I’m doing make sure you mean it.  I don’t mean the usual “Hi, how are you?” if we pass in the street, I’m perfectly OK with answering “surviving thanks” and moving on.  Alternatively I don’t mind if you don’t ask, the last thing I want is to become a complete bore on cytokines and the latest biologics . 
But if we sit down together and you ask me, I will tell you, in detail.  Just be prepared 🙂

Bonus 11. Please don’t take this as a doom and gloom list, it certainly isn’t meant that way.  My rheumatologist could find the right drug combination for me at any time, there are a number of different treatments to try, and I will hopefully get my energy and mobility back to something approaching normal.  I still have my amazing family and friends, and even on my worst days I would rather be alive with all the potential that offers for joy and love and light and enjoyment in the smallest of moments. I still honestly feel am blessed. 

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3 thoughts on “What do you need to know?

  1. Great list, particularly laughed at the meds side effects. Blurred vision or wait for wheelchair!! Oh that is the conversation I have just had with my hubby and consultant!!

    Kyla

    Liked by 1 person

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