Me, Myself and RA

I just wanted to briefly give you an overview of what my Rheumatoid Arthritis is and what to expect from my blog. My blog is about living with Chronic Illness in general, but I thought it may be useful to explain in more detail the symptoms of my illness. I also wanted to give you an idea of what to expect in terms of upcoming articles I’ll be sharing on the blog.

For extensive information I’d direct you to the websites at the bottom of this blog. However, the main symptoms I experience are as follows.

Pain and stiffness in my joints. I experience this pain on both sides of my body (one indicator of RA is symmetrical pain). I experience daily pain, usually in my hips and sacroiliac joints (very bottom of my spine where it joins my hips). This makes walking very painful, I usually use one or two walking sticks and occasionally need to use a wheelchair, particularly for longer distances.

I always wear my biggest heels to events where I’m in a wheelchair…because I can.

I also experience daily pain in my hands, wrists and ankles. This again impacts my mobility and can make day to day tasks either very difficult or very painful. Some examples of this would be filling a kettle, showering and getting dressed. It’s amazing how tasks you used to do without even thinking about it, can become something you need to plan for, adapt to or sometimes cannot do at all. My joints often feel very warm or appear red or swollen. I also experience pain in my knees, shoulders and elbows, but this is not every day.

Just me, my oedema gloves, prosecco and crime shows.

My other main symptom is fatigue. Fatigue isn’t the same as being tired, I can sleep for 12 hours and wake up exhausted. Sometimes it’s so severe my body feels like it’s made of lead and I cannot move at all. It’s a horrible feeling when this happens, but thankfully the severe episodes are not every day. I do have daily fatigue though, which is a horrible symptom. It’s like constantly functioning on half energy. A fantastic way to explain this was started by Natalie van Scheltinga who runs a community called The Unchargeables. She came up with ‘The Battery Analogy’. This likens a person’s energy to that of a phone battery. When a ‘normal’ person sleeps they recharge to 100% (or can do so when they get enough sleep) but when someone who has chronic fatigue sleeps they only ever recharge to between say 50-70%. Some days are better than others but even on a good day they’re functioning on a lower charge and their ‘battery’ drains more quickly. For example, if someone without a chronic illness/fatigue takes a shower it may drain around 1-3% battery, if I shower on a bad day it can use 30% of my battery, even on a good day it drains around 10%. If I wake up and I’m having a bad day, or flare up, I might have 30% battery to begin with…you can see how some days managing to shower can be all I achieve. For more information on this please see below.

Spoon Theory Explained

Tired after yet another blood test.

This brings me to flare ups. Sometimes I get flare ups, as do all people with RA. These can be caused be over exertion, infections, viruses or sometimes for no reason at all. During a flare up my pain is excruciating and harder to manage, my fatigue is much worse, and I can feel like I have the flu. Not a cold, like real full-blown flu. It’s horrific.

My last flare up ended at the hospital.

RA is an autoimmune disease, which basically means my immune system is wired wrong and mistakenly thinks my joints are a foreign body or something which shouldn’t be there so my immune system attacks my joints causing the inflammation, pain and other symptoms. I take medication to suppress my immune system to manage the symptoms, but this means I am more likely to get ill or react badly to a normal virus like the common cold. My last infection made me so poorly it caused a flare up which landed me in hospital due to pain and the effect the infection had on my liver function.

A tiny cut on my hand ended up in a hospital trip because my immune system is suppressed.

Anyway, not to bore you all, I just wanted to give you some idea of my day to day to give context to future articles.

Speaking of future articles, some topics to expect are:

  • How it feels when you aren’t believed and how to overcome it.
  • In sickness and in health – chronic illness in a young marriage.
  • Dealing with discrimination.
  • When friends walk away.
  • Why me? Why not me?
  • Grieving for your pre-chronic illness life.
  • Practical tips for coping with chronic illness.
  • Coping with negative emotions.
  • How to support someone who is chronically ill.
  • When chronic illness takes things away.
  • Counting your blessings – the importance of positivity.

This is just a handful of examples which will hopefully give you a feel for where this blog is heading.

Thanks for reading, I hope you’ve found this article useful and informative. As ever, your feedback, own stories and any suggestions of what you’d like to see in my blogs are always welcome.

I have also launched my YouTube channel this week, here is my first video. I’d love to hear your thoughts and make sure you subscribe so you never miss a video!

More information about RA:

https://www.nras.org.uk/what-is-ra-article

https://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/what-is-rheumatoid-arthritis.php

https://www.arthritisresearchuk.org/arthritis-information/conditions/rheumatoid-arthritis.aspx