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Lady RARA

Chronic illness: a disease or condition that usually lasts for 3 months or longer and may get worse over time.

Idiophatic: a disease of unknown cause.

Systemic: affecting the entire body rather than a single organ or body part.

Autoimmune diseases: a condition in which the body's immune system mistakes its own healthy tissues as foreign and attacks them.



I had to give it a name. Because it decided to stay with me. Which is a bit annoying but what can I do? 


So let me introduce you to Lady RARA. 


Why lady? Why "she"? 

Because she behaves like a moody woman. I never know when she appears and how long she stays. Thank God for some chemicals aka medication she seems to be settled now - most of the time. 


But what is RA? 


RA (rheumatoid arthritis) or IA (inflammatory arthritis) is a chronic, idiopathic, systemic, inflammatory, autoimmune disease characterized by pain in the joints and swelling, loss of function in the joints (you know the part in Harry Potter when Ron want to fix Harry's arm but his magic wand is broken and Harry's arm turns to a jelly arm? This how I feel when I have a flare up), morning stiffness and sleep deprivation as well as fatigue accompanying these states. The loss of function due to the disease also leads to poor quality of life. Depending on the prognosis, physical deformities and unbearable pain may become prominent over time. (hope not in the near future). Pain causes poor quality sleep; furthermore, patients complain about fatigue not only because of their disease but also because of sleep deprivation.

There is no cure for this condition at the moment. It has nothing to do with me being a massage therapist and using my hands all the time. That would be osteoarthritis (wear and tear in joints over the years). This is an autoimmune condition which could be caused by many reasons but in my case I am sure it is caused by emotional stress ( fertility and miscarriage journey last year).Or maybe some 'lovely' people cursed me for some reason.  Simple saying: my body had enough. 


How did it start? 

July 2023 - pain and swelling in my thumb, wristshoulders, elbow. I thought I just overworked and after a holiday at my Mum house will feel better. Not really. Pain came back and then went again. When I fell pregnant in September during the 11 weeks I had no joint pain at all. I was so happy. Who thought pregnancy and pregnancy hormones would help with the joint swelling? 

But two days after the baby's heart stopped my right shoulder seized up and by January I was in unbearable pain and two of my fingers locked and I couldn't move them, let alone work with them. If I need to describe the pain I would say it is like bone touching bones and moving on each other with a toothache kind of nerve pain. I do not wish this pain to my enemies. 

I was depressed because I couldn't give my best at work. Being in so much pain made me think really dark thoughts. I wanted to close my business. I was looking for a receptionist job. And top of everything the salon owner significantly increased my rent so I was in pieces, under so much pressure and stress which not helped my condition at all. 


I lost my independence because my body was in so much pain and stiffened up by morning. I couldn't dress myself (my husband had to dress me), I couldn't hold a cup of tea or a glass of water  because my fingers were swollen, I couldn't knock on my treatment room before I entered to treat my client because my knuckles were in pain. I was sleepy, feverish and cold all the time and had no energy at all. All I wanted was to sleep and the pain to go away. 


So I called my GP...


and surprisingly he listened and ordered the right blood tests and on 6th of March 2024 I was diagnosed with seropositive rheumatoid arthritis. 


It took a few days to get my head around to realise: so this is it. From now on I live with chronic, life long, incurable diseases. Hurray! :(


By that point the pain was unbearable so I had no choice. I started taking steroids for 6 weeks and also started the modification drug. 

Steroid is a miracle drug. After three hours taking the first tablet the pain in my right shoulder was gone!! And by the time I finished it, the modification drug kicked off. Modification drug means it modifies the signals so my brain does not send the "Attack those joint" signals to the cells. 


Today marks 3 months since the diagnosis and I feel much better. 


But Lady RARA is always with me. I get tired much quicker although I try to put on a brave face and smile. I try to go back to running as I haven't been able to do anything due to pregnancy, miscarriage, joint pain and fatigue. 


The battles with the NHS, GP and Rheuma team are not helping either.(that should be another post).  At work  stress is a huge no - no but it is really hard to avoid when you are self-employed and you have to deal with people. 


How do I live with Lady RARA? 

I started the journey with a positive mindset:  the medication will help me. 

I get regular (monthly) massage and reflexology sessions. Or even fortnightly because it is so good for me mentally and physically. 

I slowed down a bit and tried not to do as much as before because I just can't. 

I take Vitamins and minerals to help manage this chronic fun (which is not fun).

Sleep as much as I can at night - read before bed, not scrolling on my phone. 

Try not to get stressed, but it is hard. 

I wear compression gloves at night when my hands are tired and swell up. Voltarol is one of my best friend.

I pray for health and I hope I don't end up with deformations and in the wheelchair.


I still have so many whys and hows but I try to be positive and get the best life I can with Lady RARA. 


If you are in the same shoes I highly recommend calling the NRAS helpline: https://nras.org.uk/

They helped me a lot when my consultant and rheuma nurse did not listen to me. 


I have so much to say and share so please be prepared:  to be continued...




 

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